Treasure Each Day

Parent Teacher Conferences

2011-10-20T22:13:00.002-05:00

Tonight was a fun-filled night of meeting with all our kids teachers. We didn't have any concerns, but of course had that nervousness that there would be "something". Not only was there not one single thing of concern for any child, they have way exceeded all our expectations.

Collin is doing exceptionally well in all areas, especially math. He is such a logical minded kid. I can see math being easy for him.....it was one of my favorite subjects too. I loved it! (I'm a nerd) I see it when he sits down with these lego sets of hundreds of tiny pieces and he concentrates and follows each little step to create these masterpieces. And oh, he is so proud when he completes them.....which seemingly takes no time at all. He could do one after another all day long. Not only is he succeeding educationally, he is so well-behaved and great with his peers. The teacher said there is no reason for concern with anything......"he's such an easy going kid with a great sense of humor." He always has been. He just rolls with whatever happens. I hope he always takes things in stride and keeps that fun loving attitude. His smile just melts me and the kid sure can make me laugh!

I think Mason stunned us the most. When his teacher showed us his skills assessment we both just looked at each other and then at the teacher and back at each other with the look of "Mason?"......"are you sure you don't have his mixed up with someone else?" I guess we don't give the kid enough credit! He knew everything in terms of colors, shapes, numbers (except 1 of them), and could identify the letters they had learned thus far. He could even write his name, without looking at a name tag.....and legible. What makes this most impressive, is that we don't ever really sit down with him and work on this stuff....ok, never.......it's a 3rd child thing. They kind of get left to figure it out. We teach in "passing". His teacher said they thought Haley was the social one of our kids, but they have taken that back after having Mason. Apparently that kid talks even more. I seriously didn't think that was possible. Good thing our elementary school has a couple years to prepare for him.....especially once you hear how Haley has stormed that school.

According to the principle, "Haley walks the halls like she owns the place." At first, my thoughts were "oh dear. I have a snotty little brat that needs to be taken off her throne." But no, she is just so full of life, social with everyone, and beyond confident in herself. I'm ok with that. :) Right now, the only assistance she needs at school is getting on/off the first step of the bus. I LOVE it! The teacher says she is so typical that she doesn't even notice her as being any different in the classroom.....in fact, Haley is the least of her concerns compared to some of the other "typical" students. She's even doing better than many with her fine motor skills. Education wise, she is right on track and already starting to read. She has achieved all her letter identification and sounds for the year. Yes, for the year.....we are just ending the first quarter. And she is starting to write phonetically. She has such a love for learning, especially reading. Collin inspires her and I love her drive to follow him. Every night when we tell him it's time to read, she exclaims that she has to read to.....Mason follows suit and they all snuggle down in the living room with a book. He is such an example for his younger siblings. I couldn't ask for a better leader. Now if Haley & Mason could just take after his ability to know they don't have to talk ALL the time.

I did have one burning question going into Haley's conference....."have there been any issues/questions from the other kids about her having differences." I thought the teacher was going to laugh at me.....actually, I think she did. With Haley's attitude, and social/behavioral skills, kids don't notice anything. She said they just know sometimes she needs help up or down from the floor.....they know when to help and when to not and that's it. Kids amaze me!

I am so blessed to have 3 amazing kids.....so very proud!

A day worth noting

2011-06-09T21:07:00.002-05:00

I know I have A LOT of catching up to do on here......and one day I will get to it, I will, promise! BUT, today's events could not be pushed back for a later date. Today the most amazing thing happened out of nowhere. I sat in the Children's Mercy waiting room......just like I do every other week for the past almost 5 years now......but today, I sat and looked up to see my little boy take his first independent steps! I was in awww to see him leave his walker and take those two little miracle steps to me....completely unprompted and on his own. It was beyond describable the joy I felt. I honestly couldn't believe what I just saw. And then he did it again, and again, and again. Things haven't always seemed very clear on what his capabilities would be.....until today. Thank you Lord for the un-describable joy and overwhelming blessings today! (forgive the fact that the video is sideways....phone video and I can't flip it!) Oh well!

I stand corrected, thankfully!

2011-02-20T00:21:00.002-06:00

So as you know, going to Seattle was what we thought to be one of the best things we could do for our kiddos.......although I hate to admit, there was a moment of skepticism after-the-fact. We knew Mason needed his knee surgery now, to get that leg straightened and give him his best chance at balancing out and walking. It was so very flexed (90 degrees) that I knew in my mind that the doctor would have to, at a minimum, lengthen the hamstrings, and then possibly a joint capsule release as well. He came out of surgery and told us he relocated the kneecap, aligned the muscles of the quad and surrounding the kneecap to hold it in place, but nothing else. His knee was still flexed. In that moment, I felt my heart sink and felt suddenly nauseated. "What in the world just happened? We came out here for a reason and we are still at square one?" He tells us that he feels it will straighten out with stretching only in a dynamic brace and wants us to give it a year. I feel even worse now.....thinking we've made a bad choice and gotten nowhere. Now it's going to be another year of the same battle and yet another surgery.....why didn't they just do it now? Here's why: The doctor was right! It's only been 6 weeks since we started the stretching and Mason's leg is about 10-15 degrees from being perfectly straight, which is next to nothing. It is amazing!!!! I am even more amazed with the doctor! I have no doubt that we will gain that last 10-15 degrees within the next couple of weeks. It straightens each week effortlessly. So now, his right leg is so straight that we've gone from needing a lift on that leg to now needing a lift on the left leg. Go figure! LOL!

Wait......what?

2011-02-20T00:15:00.003-06:00

Haley, so very excitedly, says to me: "Mommy, when I get bigger, I'm going to go to kindergarten! Right Mommy?!!?!"......."yep, you sure are!".....

Mason, very excited as well, follows with "Mommy, when I get bigger, I'm going to".....it falls silent and suddenly there is concern in his voice....."wait, Mommy, what am I going to do?".........all I can do is laugh.

Here or There?

2011-02-03T21:36:00.003-06:00

It's 9:30 Thursday night and my girl goes in for surgery in St. Louis in the morning. The problem is, I'm laying here in a hospital in Kansas City with Mason. For those of you geographically challenged.....we're on opposite sides of the state! Do you have any clue as to how hard it is being HERE when I want to be THERE, but I'm needed HERE too!!!

It's not Mason's fault though.....poor little guy just wants to go home to his own bed (can't blame him on that one!) He started getting sick yesterday afternoon and just kept throwing up today. He still acted OK, puny, but making tears & a couple wet diapers. I decided we should take him in just for good measure, get him back on his feet before leaving for St. Louis....nothing a little IV fluids wouldn't kick in an hour or two. Yeah right! His count should have been between 24-36.........12. 12 was Mason's count. Waaaayyyy too low to even think about releasing to go back home & recouperate. Go figure! So HERE I am!

Undoubtedly one of the hardest decisions to make is which child to be with. One is very poorly sick and the other having surgery. I think if Haley was younger, it might have been a little easier. But now, she's at the age where she knows & understands what is going on and she is going to know I'm not THERE! I pray she doesn't ever think I chose Mason over her.....I chose the situation. I'm a mess, cry at the drop of a hat, and completely exhausted. I didn't figure I was in any shape to be driving her & I across state, go thru surgery, and come back. Then there's Mason who also understands who is and isn't with him and he wanted mommy!

I know daddy is perfectly capable of taking Haley and getting thru surgery on his own....we've only done it a million times. But it's heartwrenching not to be there for her! So why not cancel & reschedule? Well, there's a thought.....but why would I do that? For my own selfish reasons of wanting to be there for her when I know she'll be just fine with daddy (and papa is going too)? The fact that the doctor specially worked her in so that she could recover from this hand in time to get the other hand done in time to not ruin her whole summer before she starts KINDERGARTEN? The timing is all based on what's best for her.....so she can rehab and be ready for school. So I'll sit here and work on kicking my guilt of not being with her and hope she knows how badly I wish I could be in two places at once. I love my tough little girl.....I know she'll do great! Mamma on the other hand......we'll see.

Therapy on the swing

2011-01-30T19:30:00.000-06:00

Very proud of Mason.....this was a first for him!

Who's knocking?

2011-01-16T12:14:00.002-06:00

At 3 am I was awoken to what I finally realized was someone knocking. The knock was coming from inside the house though......sounded like from Mason's room. This would be impossible though. Mason just got released for weight bearing this week and is just barely starting to get around & tolerate things. We put him to bed in both leg braces, one locked out for stretching, a towel wrapped between his legs to continue helping with hip abduction per the doctor, and a hand splint on one hand. It would seem logical to me that it would be physically impossible for this child to crawl out of his toddler bed and make it across his room to the door. So my next thought is that Haley has ventured into his room.....nope, she's sound asleep in her bed. The knocking continues and then I hear Mason, "Mommy!" I open the door and there he sits. I think to myself "Seriously? What could possibly motivate you enough to go thru all this effort at this hour?"........so I ask Mason, "What do you need?" and he replies "a kleenex." Really? Who knew a kleenex could be so motivating?

Haley's foot x-rays before/after surgery

2010-12-31T19:54:00.002-06:00

One of my most favorite pictures of 2010! I am in awe every time I look at this, like it's the first time, every time! :)

My spitfire

2010-12-31T19:31:00.003-06:00

Four and a half years ago, a nicu nurse talked to me about Haley and how she would be a spitfire.......at the time, I didn't really care for the statement. Today, I'm so thankful she is exactly that! I had no idea what a riot this little girl would be and how much determination can be bottled up in one little person.

Last night in Target, I made Haley use her walker since we would be doing a lot of walking. She was not thrilled about the idea since she has been walking in her casts independantly for a few days now, but she humored me. As we're walking thru the store, me leading the way, my attention was abruptly gotten by a loud, very stern demand to "get outta my way mom, I'm about to do something awesome! watch out!" Everyone around us about died laughing as she cleared the way, running in her walking. Yes, she is a spitfire!

Today, before laying down for rest time, she told me she had a trick to show me so I sat on the side of her bed. Haley tells me "you better get up from there, I'm about to do an awesome trick and you can't sit there." My thoughts, good heavens, what is she going to do. She stands across the room from her bed and runs (in her casts), jumps in the bed, and rolls across it about falling off the other side. She just laughs! "Wasn't that awesome mom?" Of course it was!

And to let you know what kind of stubborn streak this little girl has.......the other night Daddy had a little talk with her before bed about her attitude, listening, and getting along. He goes thru his talk, Haley intently listening, and he asks her "Haley, do you think you can do better tomorrow?".......her reply....with a grin, hands turned palm up, & a shrug of the shoulders "We'll see!"

All I can do sometimes is just shake my head and laugh. God love her!

The power of presents

2010-12-27T23:10:00.002-06:00

Collin was up at 5 am on Christmas morning this year. He was absolutely amazed that "Santa" left him a present in his bed, on his pillow pet, just like he had hoped for. The boy came into our room talking 90 to nothing. I got him calmed down and talked back into bed........he gently laid his present beside our bed and proceeded talking about how he could see the stockings were full, but he didn't look, he could just tell. He obviously didn't lay down for very long though. At 7 am I awoke to him & Mason having a discussion about he presents, however, Mason's voice seemed to be much closer to me than his bedroom.......that's impossible though, mason is in a brace that weighs as much as he does. He can't move in it. Collin would have had to get him. Never doubt the power of gifts! Apparently it can give 6 year olds super powers to lift things such as his little brother, brace & all, and carry him to the living room with ease. Carrying him ever so gently as to not even make little brother cry or wine (I can't even do that!). He even got his pillow and tucked it nicely under his legs to make him comfortable. And there they lay in the middle of the living room, looking at their presents & stockings. Such a sweet, sweet boy!

Our latest trip to Seattle

2010-12-27T21:54:00.004-06:00

Our family has been so very blessed this year with people's outpour of generousity to help us. It's been overwhelming at times.

My sister was able to go with me on our last trip to Seattle while my BIL stayed behind to take care of their kids. I couldn't have done the trip alone & George had already taken more than his allowed vacation time. While waiting for our flight, I chatted with one of the Southwest Airlines attendants. Once boarded on the plane, during the take-off announcements, he proceeded to give a special welcome to Haley & Mason & told them what an honor it was to have gotten to meet them. The pilot proceeded to give them a special welcome into Seattle during landing as well & wished them a great trip. It is a very special memory!

We had a few hours to kill before the kids appointments so we went up in the Space Needle - amazing view!!! The rest of the day was looooonnnnnggg! And I mean, LONG! 6 hours in the cast room going from one child to the other. Casts cut off one screaming child, off to x-ray, cast cut off other screaming child, off to x-ray, pins pulled from one, pins pulled from the other, cast molds made, cast molds cut off, brace fitted, brace adjusted, new casts on, brace fitted again, back to adjusting.........and finally, the brace is done & on for good. My head could take no more screaming, crying children that day.......so I got a break for a couple hours before nighttime set in and I was awaken every 15-20 minutes to a screaming child until 3 am. It was R.O.U.G.H. I will admit, it was not only a long day, it was a hard day, physically & emotionally.

I'm very glad that day is over! All went well though. The x-rays of Haley's feet are still just shockingly amazing. I am in awe every time I look at them. To see her toes go from facing sideways to pointing forward is incredible. Then there are the x-rays of her standing. Pre-op her toes curl all the way under so the tips are barely touching the ground, then the foot arched up & back down to one point of contact. The surgeon put in his notes that she "had foot impressions comparable to that of an amputee on pegs". He told us "her right foot was bad, but her left foot was just god awful." So what he did with her feet, is a God given talent! They put her in short leg casts and told her she could start walking if she wanted.....of course she wants to! She has been back in her walker until today. She decided she could start walking a few steps at a time without it. She simply amazes me! I know those casts cannot be easy to walk in. Here are her new straight feet!

Mason has adjusted to his new braces very well. The first few nights were hard, but we're good now. He is out of it a few hours a day and starting to move his legs some. He's still very timid of being moved or touched. Everything looks great surgically. His right knee is still flexed, but doc seems to think we will be able to stretch it out now that the knee cap & quad are in place. What I was not prepared for when his cast came off was the scar that came along with said knee surgery. I was thinking an incision or two around the knee.......my thinking was nowhere near accurate....his entire leg from below the knee to the hip was opened up (don't look at the pics below if you don't want to see):
The trip home went well. It was kind of wild going thru security at the Sea-Tac airport and all of the security personnell remembered us from our last trip. We had all the same people doing the kids "pat-downs", testing of the kids drinks, and even the guy running the x-ray machine remembered us and said "hi". As big as that airport is, I can't believe we had the same people and they were all so nice!!!! I guess that's how you know you are a frequent flyer, when security knows you personally?!?!

A couple more weeks and we get to do it all over again! This time, my dad is going to travel with me. :)

If you ever have a doubt.....

2010-12-03T21:30:00.002-06:00

It's really been weighing on me lately the differences that we've recently experienced in medical care for Haley & Mason. Deciding to get a second opinion was easy, actually moving care to Seattle wasn't. The decision was one that would affect us emotionally, physically, financially, affected Collin, my extended family, and is one of a long term comittment, for everyone involved. We've made a lot of moves in medical care these last 4 1/2 years and been faced with a lot of tough choices. Deciphering medical jargon is not easy and breaking relationships with doctors that you've entrusted your kids future with isn't easy either. We started in KC, were sent to St. Louis, consulted with Seattle who at the time said we were in excellent hands with St. Louis, and in the end..........we should have just stuck with Seattle from the beginning.

It makes me second guess our decisions at that time and ask myself over & over "what if". What if we had taken Haley to Seattle from the get go? I know she's doing great now, but it's hard not to imagine how much better she might be doing. Would she have lost all her range in her hip had that surgery been done sooner with a different approach? Would she dealing with the extreme issues with her feet? Going to Seattle for a second opinion on Mason was honestly spur of the moment, I woke up one day and basically said "this is what we're doing, I don't know how, but we are". I had this nagging doubt in the pit of my stomach that we just weren't on the right path for him. And day after day of listening to Haley complain of pain, I knew that things just weren't right there. I just didn't know how right I was until we decided to take the plunge. We didn't learn everything the first visit, it was a pretty generalized evaluation. It wasn't until we decided to move forward and went to Seattle for the second time that we started really figuring things out. We learn something new every time we talk to them and I sit dumbfounded.

Doctor A (from KC) plans for blood transfusion for Haley's hip surgery. We have to get her blood drawn to make sure the right type is available. Doctor B (Seattle) looks at us like we have two heads when we mention blood transfusion as "it is not a large blood loss surgery and they have not done a transfusion for this type surgery in years" Even with having major foot surgery & his knee done in addition to the hip, Mason still did not need a transfusion.

Doctor A inserts large 'L' shaped plate in Haley's hip with 3 large screws that will need to be removed down the road. You can feel the lump in her thigh. Doctor B inserts small flat plate with 2 tiny screws that will grow right into the bone and become a part of it.

Doctor A says we need to wait 2-3 years to have hip surgery as the socket is too small. It doesn't grow so donor bone is used to create the socket. Doctor B says it should have been done before age 1 year so it could be done much less invasively, then uses Mason's own bone to create the socket from his femur osteotomy.

Doctor A says Haley's hip is looking great and no blood supply issues. One week later, Doctor B, as well as another doctor in the practice, immediately look at her x-rays and note blood supply issues just by looking at the bone growth pattern of the femur head......which is noticable to the untrained eye, I had just been questioning it before the doc walked in.

Doctor A (St. Louis now) states that Mason should not have knee surgery for at least another 2-3 years, school age. Doctor B (still Seattle) sees that Mason is ready to move and has a good chance of walking if he was in a position to do so. That he needs surgery sooner than later to give him the best chance at this.

Doctor A says he just needs to go in on Haley's feet and repin the talus bone back into place, same surgery as before. Doctor B examines her feet and asks "did he look at her feet?" Stating they are very stiff and need bony removal. He finds the bones fused.......pinning the talus bone is not even an option. I hate to think what would have happened in the OR in St. Louis if her foot was opened to the mess they were in.

Doctor A states that the tendons need lengthening/released and that is causing Haley's outtoeing. Doctor B releases everything in her foot and it does not even budge, not one change.

Doctor A is ready to leave Mason's feet as they are until he starts complaining of pain. Doctor B realizes that his feet will be as bad as Haley's if we do nothing. He ends up doing a complete release and realizes that his foot still wants to turn out some. To get a correction that will last, he removes the navicular. All went easily, because it was done NOW, not later.

Doctor A (KC) reviews spinal x-rays of Mason and determines he is progressing, needing bracing. X-rays are taken with him sitting on a stool, squirming, not sitting up straight, etc. Doctor B explains the need for traction x-rays to determine the flexibility of the curve and the progression of the rigid curve, which is not acheived by telling a two year to "sit still". Bracing is not needed yet. We need to determine if he really is progressing or if his curve was exagerated by the way he was sitting, trying to balance himself on a stool.

It amazes me the difference in doctors. I don't see how things can be so drastically different in the evaluation of the same patient. As parents, we put our trust in them that they know what they are talking about and that procedures are being done at their very best. I thank God for giving me those "doubts" and nudges to seek out better options. I wish I hadn't ignored them with Haley or maybe I just needed the nudges to be a little stronger. :) I know this probably won't be the end of all our doubts, but it at least lays quite a few to rest. Live and learn.

Today's update

2010-11-12T23:28:00.003-06:00

Mason ended up in the OR for about 13 hours yesterday, a far cry from the scheduled 4. Then he spent another 3-4 in recovery. Little guy didn't want to wake up, stay awake, or settle his heart rate down. It was a rough night, but he seems to making a turn for the better tonight. He's squeezed out a few smiles and is starting to take some bites of food & drink a little. He wants everything he can't have....to sit up, get in his walker, down on the floor, back to the "hotel", and all the cords OUT! I think tomorrow will be a much better day for him.

Haley is a rock star! Plain and simple. She starting eating & drinking last night and has moved to oral pain meds today. She spent most the day in her wheelchair eating ice cream....happy as could be. They even rectified the cast situation today and wrapped them in pink. That brought a big smile to her face!

Yesterday's surgery updates

2010-11-12T23:26:00.000-06:00

Haley's surgery took a little over 4 hours today. We saw Dr. Mosca, one of the top foot surgeons in the nation and who sees people from all over the world. He listed Haley in his top 5 of most difficult. He did releases of the achilles tendon and other muscles in the hind foot and her foot did not respond at all. When he opened up the inside, he was unable to locate any joints. The bones in her foot had essentially already fused themselves together. He was able to remove the portion of the bone that was in the place where the navicular should have been and was able to bring her forefoot back around & down. He also had to shave down part of the heel bone (calcaneous) as it was protruding from being dislocated (pointed down). Once this was all done, she now has a flatter foot that she can more evenly distribute the weight on and her foot is facing forward as we had hoped. It is anticipated that surgery will hold for her. He was not able to completely get the heel bone back in place, however, if down the road there are more issues, it is an option to cut down that bone as well. He told us that by getting the surgery done now that we have given her the best chances of walking comfortably. Had we waited, one of the next options on the table would have been amputation and prosthetic feet for her. She is in her room and sleeping now. First thing in the recovery room she was very upset with having the casts on. She did not like them, they were not pink & they didn't have Dora. lol She told me that "having casts is just no fun." Hopefully her spirits rise as the pain goes away.

Mason has now been in the OR for 9 hours and they expect another hour before he makes it to recovery. This last hour they are measuring him for bracing and then have to apply the body cast. We just got to sit down with the surgeon and go over everything. They did the soft tissue releases in both feet, however, they still kept wanting to turn back out. It was decided that he would need the navicular bones removed in both feet as well, just as Haley had done. The difference though, is that Mason’s feet were much more flexible, no fused bones, and all joints were identifiable. They didn’t have to do any shaving down of other bones either. So his feet are now in good alignment.

The kneecap was easily put back in place. They rerouted a tendon to help stabilize. No quadriceps lengthening was needed. YAY! The hamstrings looked good. They released the envelope that surrounds the hamstring, but no major release was needed. Once they were in they were easily able to lengthen his hip extensor to allow him to straighten out his leg more at the hip as well.

The hip was easily put back in as well after they cut out a section of the femur (about ¾ inch). There were no issues with blood supply or stretching of the nerves. Doctor felt the hip was very stable and held well once they turned down the socket.

They were unable to give him an epidural for pain control due to the scar tissue of his spinal cord detethering. They just reserved him a room in the ICU in case there is an issue with pain, however, the surgeon stated they had reduced the anesthesia and his body was currently handling it & breathing on his own. I pray this stays the case, but if being in the ICU would make him more comfortable then I hope they put him there.

Horse Show

2010-11-07T23:03:00.003-06:00

Haley rode in the Annual Horse Show at NRTC this year. She did great! I am very pleased at how far she has come this year in riding. She has gained lots of core strength and her balance has improved greatly as well! I'm very greatful for the program and for all the volunteers who make it possible.

Football

2010-11-07T22:51:00.003-06:00

Collin finished up his football season this past weekend. I'm so very proud of how much progress he made this year! He went from not wanting to run the ball to 2-3 touchdowns/conversions a game for the last few games. He even got to QB one game and stepped up to the role. He did awesome and he absolutely LOVES playing.

So many updates, so little time

2010-10-13T22:05:00.002-05:00

We have had such an eventful summer and start to the school year. Life never seems to slow down! I'll start with all the "medical" stuff. :)

We have done a lot of travelling the past few months and lots more to come. We revisited the AMC clinic in Seattle the end of June and decided it's the best care for Haley & Mason when it comes to lower extremity care. We went back to Seattle a couple weeks ago to finalize plans on both kids upcoming surgeries. It never fails that once I think we have it all under control and on the right path with the kids, we get thrown for a loop. I pray that we have made the right decisions............it's hard not knowing for certain! Haley has a 6 month window to have a foot reconstruction done before she gets to a point of needing a more drastic surgery. The specialist we saw even decided he needed to bring in someone above him for her case........her feet are very complex, so we've been told time & time again. SO, Dr. Moska will lead Haley's surgery on her feet and will also do Mason's feet (his is more of a preventative measure). At the same time, Dr. Song will work on getting Mason's hip back in place and relocating his knee, correcting his knee flexion contracture. Call us crazy, but we're doing them at the same time! Just waiting on the scheduling nurse to call with the day.

Also out in Seattle is the most amazing Dr. Judith Hall......our geneticist. She very excitedly informed of us some rescent research advances. There is a lab in Berlin, Germany that has discovered medicines that are helping to improve muscle function/contractures in mice that have been born with multiple pterygium syndrome. The best news is that these drugs are already on the market, FDA approved, and available for our children. We are now just awaiting research trials to be approved/started. It could be a few years, but it's a major glimmer of hope!

We also went to Orlando, FL this year for the AMC convention. It was awesome! I'll post pics eventually. :) It was so great to see old friends and make new ones. Especially meaningful was getting to spend time with other families with the kids specific diagnosis. I love them all and am so blessed to have a special connection with them. People who understand it ALL!

Haley had her first sleep study a couple weeks ago as well. How that child slept is beyond me....the amount of wires, bands, wraps, cords and goup that was put on her was unreal. Not only did she take it like a champ, not a single complaint of doing it.......she knocked it out on the results. The ENT sat reading her results, shaking his head, mumbling under his breath....."this is amazing, impressive, can't believe this". He turned to me and said "I've never seen results this good." I replied with "oh, never a kid with her syndrome?" - "NO, NEVER ANY KID". God is great! With a paralyzed, tacked down diaphragm and tonsils almost touching you would expect some sort of complication, but not with my Haley. Oxygen saturation thru the night - 99%, CO2 levels at 51 (her baseline was 49-50), no obstructive sleep apnea, 1 central apnea the entire night (people typically have 1-2 an hour!). The only thing we found out was that her protein levels were a little low, contributing to some sleep disturbances due to involuntary muscle movement. That's an easy fix though......an iron supplement. She is scheduled for her tonsils to be removed next week in preparation of her cleft repair (if needed). It is a possibility that once the tonsils are out of the way, there will be room for the muscle to close off like it should and avoid further surgery. I will leave that in God's hands, just like all else.

Mason has been working on his walking skills with the Kidwalk all summer and gotten quite proficient. He tends to use his arms more than anything though, until just recently. We've been trying to get him in Haley's old walker which is not as supportive and forces him to use his legs. It was all worth the fight! Today, he decided he could walk in it like he had been doing it all along. We went to the park and off he went. So proud of the little guy! He also showed off his skills of climbing stairs by climbing up & down the playground equipment constantly.

Haley's balance and confidence has really come a long way. She is now stepping up & down small curbs with no assistance. For the first time Monday night, she actually jumped on the trampoline at gymnastics with NO assistance. It was a great sight to see both feet leave the ground at the same time and her keep her balance. It's the small things!

Well, that's the major stuff for now. I know I've left out a lot of other details, but that's the jist of our medical updates over the past few months. Next on my list of things to do is update pictures and Collin's updates!!! :)

Baseball - KHRA 2010

2010-07-16T22:13:00.002-05:00

Collin played in coach pitch league this year. They got 3 pitches and then got to hit off the T if needed. We had a great team this year. There were some boys with talent! They all played well and although we don't officially keep score at this age, there is only one game questionable that they might have lost. George & I were very proud of all the boys on the team and how they progressed thru the season. This weekend we will be having their end of season party........should be lots of fun!

T-ball

2010-07-16T21:57:00.002-05:00

Haley's first year of t-ball was a lot of fun! She of course absolutely loved it........batting more than fielding though. She had the best stance on the team, would tap her bat on the base, and then look out into the field to see if they were ready. If you were out there playing in the grass or not paying attention, be ready for Haley to call you out! She would stand at home base and yell at them to get ready, telling me "mommy, that little boy isn't ready. He's not even looking." Gotta love the take charge attitude! Now, do you think that when she was in field that she paid attention? Absolutely NOT! She had more interest in playing with her glove to ensure it fit tight or just not wearing it at all..........of course it did make a good hat from time to time.

Gymnastics

2010-07-12T23:24:00.004-05:00

So, I have a little catching up to do......understatement of the day! Thought I better post some pics of the kids gymnastics before they start a new season.

From day one Haley has been thrilled with gymnastics. While all the other little girls cried and held on to their mommas refusing to enter the gym, I watched my little red head bob across the mats with the biggest smile on her face ready to go. Nothing had changed by the end of the season as recital time approached. That same huge smile was plastered on her face as she ran onto stage to show off her accomplishments. She was so proud of herself, as was I!

Collin started the season with a little more caution. The boy couldn't even do a sommersault.......boy did he come a LONG way! Collin absolutely did NOT want to be in the recital though. When I approached the subject at dinner one night he was almost in tears at the thought, but I signed him up anyway. Terrible mom, I know.........but look at him! He did awesome and loved it! He kept wanting to do the recital again & again.

......I told you so.....

2010-04-29T00:33:00.002-05:00

We had Haley's IEP meeting on Monday this week to review her progress and update goals. Her PT felt she didn't have many new ideas of what to work with Haley on. She felt our goal of Haley being able to independantly get up & down from the floor without assistance was an unattainable goal. She started talking about getting her a reacher so that she could pick things up off the floor & maybe use it to help her get up & down. This just didn't settle well with me. I didn't want to "give in" and let her be dependant like that.........not yet. I'm not convinced she won't be able to regain that ability. There's a reason for that......

Tonight, Haley approaches me out of the blue and says "look mom, look what I can do". She proceeds to kneel down on the floor, in the middle of the living room, and stay kneeling on one knee. I'm not sure who was prouder.......her or me! It was a major breakthrough for her. I knew she could do it! Now, we just need to achieve getting back up. :)

BTW, I promptly e'd her PT and let her know what Haley had done. Recommended she keep working on that cause I have the faith! Hopefully she will too now.

Don't tell my Haley she won't do something cause like always, she'll turn around and make a fool of you. That's my girl!

God has really shown himself around here!

2010-04-25T12:11:00.002-05:00

I'm almost speechless today. I have such overwhelming joy in my heart today it's crazy wonderful! As I've mentioned before, Mason has been progressing in leaps & bounds lately and is continueing to do so. Hi speech evaluation came back and he is 3-6 months ahead of his age in all areas......communication, responsive, and reception. He is using 2-3 word sentences and words that are 3 & 4 syllables long. He has army crawled half-way across the living room, by his own choice, just to get his sister. He finds it hilarious to lay across my leg and do push-ups to play peek-a-boo.........I just sat there enjoying the moment wondering "who is this child?" He can finally keep himself balanced enough to slide down his little tikes slide all by himself, over & over & over..........then decided he needed to try to climb up the ladder to go down the slide himself, with a lot of help from me of course. I'm just overjoyed he WANTED to try. He tried jumping on the mini trampoline and wanted me to help him climb our flight of stairs. He got a new motorcycle power wheels and drove it around the block with no help. He can steer that thing better than kids twice his age. Last, Collin came running up the stairs screaming, "MOM, MOM, you have to come see what Mason's doing. You've never seen anything like it!" So I run downstairs wondering what mess he's gotten himself into, only to find him STANDING at the train table........holding himself up COMPLETELY by himself, NO BRACES. I was so overwhelmed with joy. My heart just about burst! Oh, and by the way.........all of this has happened in the past TWO days and did I mention he's been sick on top of it all? Double ear infection, sinuses & coughing. He's been a busy a little bee! God simply amazes me with all that he can do!

Recent pictures

2010-04-10T21:34:00.004-05:00

Mason has finally figured out the whole "driving" thing, with the exception of good steering. All I hear is "momma, that way"

Collin enjoying the swing...
Mason has taken a liking to Collin driving him around on the 4-wheeler. When Collin takes a "break" Mason sits and waves Collin over yelling "c'mon Cawldin, c'mon....ride"

Gearing up for another season.....coach pitch this year.

On the hunt for eggs....

My little gymnast......swinging her legs as high as she can just like Ms. Grace has been teaching her in class.

Miss cool

Mason loves rocking out while we play Rockband & Guitar Hero.......he's actually quite the drummer, bass & all!

Mason & Haley chillin' together

Mason's new set of wheels

2010-04-10T21:17:00.002-05:00

Mason is getting to try out the Kidwalk for a week before we decide on what to get him. So far, I love it and Mason is getting the hang of it! It's great to see him up & playing with the other kids.

Firsts

2010-04-06T23:01:00.003-05:00

When your child accomplishes tasks for the first time, it is such a wonderful site to see. I've learned with Haley & Mason though that it's so much more than just accomplishing a common task and moving on. It is a major milestone, a life-changing moment, when you realize that your baby is going to overcome the odds and persist to succeed.

Mason had some firsts yesterday, all within an hour. He finally figured out how to lay himself down from sitting (instead of just falling backwards) and he did it like he'ld been doing it for weeks. He held himself up in tall kneeling at a bench and played there......even more amazing, he laid on his belly, propped up on his arms and played, HAPPILY! I sat there wandering who this child all of a sudden became and then he really threw me for a loop......he army crawled. HE CRAWLED! I honestly never thought I would see that child on his belly, let alone playing and pulling himself forward. His PT and I were both very proud!

The last few weeks I've seen major changes in Mason. Whether it's coincidence or whether the new meds he's on did the trick, I'm not sure, but all I know is that he has accomplished more these last few weeks than in the last two years. He is finally gaining weight, each & every week. It might only be a couple ounces, but he's not losing. He is asking to do things like stand & walk and is able to put weight thru his legs, even without his braces for a few moments. He's doing things like mentioned above being on his belly. He's even pulling himself around outside on his hot wheels tricycle & driving power wheels around. He has the desire now to do things and I could never get that out of him before. I know God is working in him and I can't wait to see what all is in store for us in these next few months.

Friday, we are going to test out the Kidwalk (gait trainer) - I think this is going to open up a whole new world for him & can't wait to see how he does. (www.primeengineering.com) My dad came up last week and put in a ramp so Mason will be able to get in & out with whatever assistance device he ends up with. It's also nice that Haley can get in & out on her own now too and I don't have to worry about her on the stairs with no rail (it was scary watching her use the trash barrel as a handrail........kind of gross too). Of course Mason thinks it's a big slide and loves scooting down it. I'm very blessed to have a father who has the time & skills to do these type things for us. He has made us so much adaptive equipment, I can't thank him enough.

BTW.....

2010-02-18T21:41:00.002-06:00

Mason also had surgery on Monday. This was to bring down his left testicle and hernia repair. It almost made it down on it's own, but the hernia was too large preventing it. All went perfectly. :)

AND last, but certainly the best news of the last couple weeks..........Haley is completely potty trained! She woke up a week and a half ago, it was a Saturday morning and she literally woke up and told me she had to use the potty. She's been going ever since. There were only 2 minor hurdles to get over.........going in public places and going #2. Both accomplished today! She is so excited and so very proud of herself (as am I). She had to call me from school today to let me know she used the potty there. She announced she was wearing big girl underwear to the hostess at Olive Garden, the deacon at Church, her bus driver, the cashier at Target, and just about everyone else in between. She's my big girl now and I'm so very proud of her! I will have to give some credit to her OT though for coming up with a way of making her comfortable sitting on the potty - a nice comfy back rest finally did the trick! I love her!

The journey of questions continues

2010-02-18T21:09:00.003-06:00

In our journey of trying to figure out what's going on in Mason's little body lately, we have yet to find any answers. We went to endocrinology today to listen to "this level is normal", "that level is normal", "I don't know", and "I don't think we're dealing with an endocrine issue". Good, that they couldn't find anything wrong. Bad, they couldn't find anything wrong. Stupid me thought we were done with this journey of the unknown, but I feeling like it's just getting started. All of his blood tests came back at normal levels........thyroid, blood sugar, growth hormones. His zinc was low, however, a few weeks ago it was normal. Some medical professions claim that your zinc level can affect your appetite, but it's not "proven". So with that, we have a script for extra zinc. Guess we'll see..........seems like a common phrase here recently. The tests did show high inflammatory levels, but this isn't endocrine's area so once again, we'll wait to see what that's all about. The rash is still appearing and disappearing. He's still running a fever off & on. His cough is terrible, again. The mucus he produces is hardly managable. I've seen him turn blue one too many times in his 2 years. So what's the next step..........a sweat test. Yes, they actually put electrodes on you to make you sweat, collect it, and test it. For what? Cystic fibrosis. I really didn't know what CS was exactly, but I knew it wasn't good. I had it in my head that I wouldn't look it up and worry myself needlessly. Good plan! If only I could stick to my plans. What's that saying........listen to your gut! Somebody needs to slap me in the back of the head and remind me of that. I looked it up. Stupid, stupid, stupid me. The docs don't really think he has it, but they have to rule it out given the situation. That's what I'm banking on.......that the doc is actually right! As badly as I want to have a "reason" for all that Mason is enduring, I sure don't want this to be it. So to whoever reads this, please say a prayer that this test tomorrow comes back negative.

What next?

2010-02-12T23:10:00.002-06:00

I haven't posted recently due to being consumed with the overwhelming plethera of new "problems" to figure out. It's been a rough couple of weeks, mentally. Mason's lack of ability to grow or even maintain his weight gained him a feeding tube that I had the pleasure of putting down him. He's had for about 2 weeks now so that we can supplemental feed. More bloodwork is being done - labs were drawn today. Next week we have to go in for a test to check for cystic fibrosis. As if that wasn't enough, he's been breaking out with this rash for a couple months now.......randomly. It comes & goes, however, it tends to show up only around his joints. So in addition to endocrinology, we will also be adding rheumotology & dermatology to our list of clinics. He is being tested for rheumatoid arthritis. The rehab doctor has also started him on carnitine. It's an amino acid typically found in red meats that help transport protein/nutrients to the muscle. They have seen significant improvements in some kiddos on this, however, they have different syndromes. This is kind of a trial, but I have hope that it will help.

We met with our lower extremities surgeon concerning Mason's flexion contracture of his right knee. Apparently the quadricep muscle is running down the side of his leg instead of the front and attached to the knee cap, on the side of his leg. The quadricep is functioning more like another hamstring, which is inhibiting his ability to straighten his leg. So what do we do, reconstructive surgery and quad lengthening. If we don't do anything he will not have a chance at walking. If we do this surgery, it's possible he won't walk either as there is only one quad muscle and if you cut it you run the risk of losing strength to be able to straighten your leg. We're going to St. Louis in a couple weeks and then to Seattle at the end of June. This is one area we feel we have to get all our options on. I'll travel the world if I have to.

Things haven't been easy lately, but I know we'll get thru just as we always do. I was reading a friend's blog the other night, she too has a son with escobar syndrome, and I could have just copied and pasted her post into my blog. All the same exact feelings. So Beth, I ditto your pitty party for today. Sometimes I just want to shout "enough is enough already". I want to see Mason just start taking off. I do have to admit he has had one major accomplishment in the last couple weeks though.........he is finally able to sit himself up from lying down. I was a very proud mama that morning! Funny how all the negative seems to take over so quickly though. It can honestly be a daily battle to keep your head up and focus on the positive. How people do this without God on their side is beyond me.

Happy New Year!

2010-01-09T15:24:00.000-06:00

Meigan, Haley, Shayla, Mason, Faith, Collin, & Riley

Christmas 2009

2010-01-09T15:12:00.005-06:00

How can you not laugh?

2010-01-09T14:29:00.002-06:00

It had been a long day, long week rather. The kids and I didn't leave the house all week. I didn't mind for the fact that we have piles of snow taller than myself outside with highs of zero for the day. However, I have to admit we all had a little cabin fever and started getting easily annoyed with each other. So at dinner time, I'm finally at my wits end with Collin & Haley and their bickering at each other and constant need to tattle. I begin sternly telling the kids to "get in your seats, sit right, turn around, we're eating dinner, not another word!"

Mason: "AMEN!"

George & I just looked at each other.........did he seriously just say that?

Our visit to the rehab medicine doctor

2010-01-03T18:58:00.003-06:00

Haley & Mason had their 6 month check-ups just a couple days before Christmas and I got the best gift of all! After therapy, we headed to Hanger to get Haley's shoe inserts and a lift put on her new shoes for her leg length discrepancy. The orthotist swore to me she didn't need a lift and looked at me like I hadn't a clue. She's had at least a half inch to full inch difference in her legs for as long as I can remember. Even just a few months ago they put a lift on (our last visit to rehab). I dismissed it and figured our rehab doctor would take care of things when we saw him next. I told him about our experience downstairs and he looked at me puzzled, got his measuring tape, and went to work.........measuring and measuring and looking and straightening.......yep, they are the SAME length. He shrugged.........no medical reason for this to happen. Next up was Mason. At last check for scoliosis Mason's curve had decreased around 10 degrees. This time (unofficially/no x-ray), no visible scoliosis was to be found. NO CURVE, NO ROTATION, NONE!!!! Now that my friends, is a miracle!

Mason went in for an MRI of his legs last week and we are awaiting results. They also did a complete lab work up as he doesn't seem to be able to grow. He's kind of plateaued over the last year and falling further & further off the charts, whereas Haley has finally made the charts. We will see.

"I didn't do it"

2010-01-03T18:38:00.002-06:00

Dull moments are few and far between when you have 3 kids aged 5 & under. Typically though, it's them causing the excitement.........but not last night. I took Collin to Target with me, just the two of us. As I picked up a case of pop off the shelf all the cans proceeded to fly out everywhere into the aisle, one of them bursting open and literally spraying everywhere.......red soda at that, all down the front of me. I told Collin we needed to find an associate to come clean up the mess and he replied "make sure you tell them that it wasn't me mom." Yes son, I will make sure I take the blame. LOL!

Our summer project

2009-12-06T15:33:00.001-06:00

Before

2009-12-06T15:32:00.000-06:00

Mason enjoying his stander

2009-12-06T15:30:00.000-06:00

Scarecrow Collin

2009-12-06T15:29:00.000-06:00

Pumpkin Patch

2009-12-06T15:27:00.000-06:00

Halloween 2009

2009-12-06T15:24:00.000-06:00

Gymnastics

2009-12-06T15:18:00.001-06:00

Haley Stretching for gymnastics

The most exciting news of all.....

2009-12-06T14:55:00.003-06:00

I don't know how I missed this in my novel update, BUT..........both Haley & Mason had scoliosis checks a few weeks ago. Mason's curve decreased by 10 degrees, now only at 15 which is basically nothing. His shoulder blade has come down quite a bit too and is not noticably "winging" out. :) And as you have heard time & time again how my children like to compete......Haley's curve went down too! Whereas Mason has a "C" curve, Haley has an "S" curve. her upper curve held the same, but her lower compensating curve straighten out 9 degrees. It was the best day! Even made the docs day!

In case you've wondered.....

2009-12-06T14:06:00.002-06:00

If you want to know how one can go two months without posting, just keep reading. Let's see......where did I last leave off? Oh yes, Mason was just released from the PICU for spinal cord detethering & hand surgery. Once we got to the floor his spinal incision bulged out and he was ordered for longer bed rest. It gave us a little scare, but all turned out well.........a couple more days on the floor and we got to come home. So, to summarize the last two months without writing a novel.......

* We have been to St. Louis twice (his hand turned out beautifully btw!!!!)
* I've been working 40+ hours a week until the last few weeks and now I'm down to 30+
* We all 5 came down with H1N1........at the same time. That was fun!
* Mason took a trip to the ER due to his curiousity of the stairs. Fortunately just a few rug burns to the head and he's ok. Very scary moment when you hear your baby go down a flight of stairs like a bouncing ball.
* Halloween came & went - Our Knight, princess, and dragon had a great time.
* Thanksgiving came & went - it was relaxing, for one of the first times since having kids.
* I did a bible study on the book of Esther - it was awesome!
* The kids are still in gymnastics and loving it. Collin has come a long way!
* Parent teacher conferences were uneventful. Both kids couldn't do any better. They gave Haley the kindergarten readiness test just because they wanted to see where she was..........they told me they sometimes forget she's the 3 year old in the class as she "gets" things quicker than the 5 year olds. That's my girl! Collin is by far ready for kindergarten and I know he's going to love it.
* Mason has decided to throw us for a loop on his knees. We had hoped a simple hamstring lengthening would take care of his right knee contracture, however, they can't find kneecaps and aren't sure the quadricep mechanism is attached in the right spot. What's that mean? Another MRI to figure it all out. Joy!
* Not to be outdone with throwing the parents for a loop, Haley was diagnosed with a submucous cleft palate. This explains her hypernasal speech and articulation problems. Her tonsils were also very enlarged and might be causing part of the problem as they are in the way. Next step is to meet with the surgeon to review and schedule surgery. Tonsils will come out first and then we'll see if any palate repair is needed.
* AND since Haley & Mason seem to be clones of each other, of course we have to now take Mason in for evaluation and to the cleft palate clinic.
* On a good medical note, Haley has been taken out of SMO's and is just getting a shoe insert & a lift put on her shoe. She actually has a better gait without orthotics than she does with. The inserts will be cushioned at her pressure points to make her more comfortable.
* Haley let me know at dinner last night that when she gets older she is going to run her house, have one boy & one girl, Nana & I are invited to come over, but we need to bring food cause she'll be sad if there is no food in the house. :)
* Mason is talking up a storm.........he's so cute!
* Collin has been going hunting with George. He gets so excited about it and loves that time with his daddy.

The grand finale of the last two months........all 3 kids are sick again. Haley has a sinus/throat infection, Collin has a double ear infection, andCollin & Mason both are on breathing treatments. Their O2 levels were at 93% this morning. I hate asthma, in case you were curious to know. So Mason's surgery that was scheduled for tomorrow is now cancelled and personally, I'm glad.

PICU

2009-09-22T07:01:00.002-05:00

Mason is doing great with his recovery. He was finally able to kick the oxygen at 4 am this morning. He started drinking late yesterday which is unheard of for him.........it usually takes him at least 24-36 hours after surgery to even consider it. He got orders this morning to be moved out of the PICU and up to the neurology floor. YIPPEEEE!!!! The PICU is such a stressful place, not just the fact of having a child in here, but being surrounded by all the other families that maybe aren't doing as well. I'm reminded each time how fortunate we are.........what a blessing it is to always bring our child home. I'm also reminded of the miracles that God works each day. Our PICU neighbor lost their 17 year old daughter last night for 7 minutes........her lungs our now clearer than before and she's starting to respond. That's a God thing!

Waiting

2009-09-21T12:19:00.002-05:00

*sigh* - Mason has been in surgery now for 5 hours. He is having his spinal cord detethering and right hand/finger release done today. All is going well, but I'm ready for him to be done......to see his cute little face and know he is ok.

Latest & greatest

2009-09-05T22:56:00.003-05:00

Mason is really showing his signs of independence lately. First the scooting, eating with spoons/forks, drinking out of "big boy" open cups, and last........supporting some weight and trying to take steps in the walker. He has shown lots of signs of wanting to walk in pool therapy so we decided to get a sling seat for Haley/Mason's walker. He cannot bare much weight, but those little legs just run as fast as can be. He was able to propel the walker a few inches on the hardwood floor by himself. Every time I take him out he scoots back to it a few minutes later and points to get in. He loves it!

He also has a lot of new words........bye bye, no, backpack (bapa), dog, up, more and several repetitive phrases that I've learned to interpret. He has really taken off in the last few weeks!

The next scheduled surgery is in two weeks. He will have his other hand released and at the same time his spinal cord detethered. Then in December he will have his other hernia repaired and archeopexy on the left side. We have postponed his hip surgery/hamstring lengthening that was scheduled for October.

As for Haley...........she has finally learned to take off her shirt 100% by herself! (as long as it's not a tight fitting shirt). For the first time today she climbed up into her carseat ALL by herself! I'm sure all the practice climbing onto her sandtable and entering her playhouse through the window helped lead to this accomplishment. She has also mastered jumping on our little indoor trampoline, getting a good 6 inches off the ground and she is so so very proud of this. I constantly hear "mommy, watch how high I can jump". (I'll post video soon) Last, but not least.............she is completely walker free. I can't remember the last time she used it. Such a great site!

Time for a trade-in

2009-09-05T22:49:00.002-05:00

The kids decided it was time to trade-in the fire engine and barbie jeep for a new set of wheels. We stopped at the Mayfields on our walk around the block and Collin's eyes landed on a 4-wheeler........so of course Haley had to have one as well. Hers has hand controls on it and seems to be so much easier for her to handle than the foot petals. She drove it around the block the other night and everytime she ran it off the side walk (which was more often than not) she let us know that it wasn't working right.

First Day of School

2009-09-05T22:32:00.002-05:00

Collin & Haley started school on August 25th. I took them their first day, they were so excited to go. I pulled up to the door, the teacher came out to get them, they yelled bye to Mason, and off they ran as happy as ever. No "goodbye mom", no hugs, no nothing.......I stood there in shock and then listened to Mason cry his eyes out for the next 7 minutes when he realized they had "left him" all alone in the back seat of the van. Upon pick up though, Collin about knocked me over as he ran out the door. Haley on the other hand, walked out telling me she "was not going home." Two weeks later, they are still loving it and are now riding the bus to school every morning which they think is the best. Collin jumps up & down yelling when he sees the bus round the corner. I was even told the other day that they didn't want to ride home with me, they wanted the bus to take them home too. It feels good to see them so independent and enjoying their new school so much. They come home each day telling me all that they have learned and showing me new skills.

Collin was very proud to show me how to do jumping jacks the other day and his teachers have praised on what a great peer model he is. If you ask him who is in his class though, only one person exists..............Abby. The only girl in his class and the only one he ever talks about.

Haley has been outstanding in class as well. Very cooperative, which was a concern of ours as she can be very stubborn & head strong at home, but apparently not at school. The teacher came out telling me how smart she was the other day........she is answering questions & recalling things from storytime well before the 5 year olds in her class can. On the second day of class her teacher told me she will be the one who keeps them on track in class as she was already telling the teacher that she wasn't sitting in the right spot during circle time.

Collin's 5th Birthday

2009-09-05T22:13:00.004-05:00

It was hard to believe that Collin was turning 5! He is one unbelievable kid on every level. We celebrated on his birthday with lunch at T-Rex with with Haley, Mason, cousin Faith, and friend Emaline. The kids had a good time! We had his party that weekend. The Knight costume did not come off for at least 48 hours, he slept in the cowboy boots, and spent his b-day money to complete his "army" collection of toys..........which he has played every day since his birthday 3 weeks ago.

Mason is mobile!

2009-09-05T22:02:00.002-05:00

Mason finally mastered the bum scoot about 3 weeks ago! We are all very excited & he is loving his new found freedom...........doing all those things kids his age do, like emptying every cabinet he can find and following his brother & sister around the house. Now he being the typical little brother "pest" and trying to play with all of Collin's army stuff, in which Collin is not to fond of. So how does a 5 year old solve this problem? Move all toys into mom & dad's room and baracade the doorway with pillows so that little brother can not get in.

Where we spent our summer......

2009-09-05T21:54:00.000-05:00

Haley's 3rd Birthday

2009-09-02T23:31:00.002-05:00

Deanna Rose Farmstead

2009-09-02T20:25:00.002-05:00

If only........

2009-09-02T17:52:00.001-05:00

Collin's idea of the day:

"Mom, I'm so tired of going up and down these stairs all the time. Can't we just put in a ramp and transform me into a race car?"

My latest invention

2009-07-14T23:11:00.002-05:00

We've been needing to come up with something to help Haley keep her balance in the water, while at Oceans of Fun. I have Mason in my hands at all times & she's not confident enough in the water with all the other kids running around not to have something (nor am I). In the past she has just taken her walker straight into the water, but that is going back to EI since she turns 3 in a few days. She does not like being confined in an inflatable toy so I came up with this and it works awesome! We tried it out at pool therapy today and found the handles are perfect for shallow water and then if you flip it over in the deeper water, the handles are still the perfect height under water for her to hold. She even used to help balance while walking over steps in the water and it held her balance perfectly. They actually make water walkers, much like this, but they are enclosed........I wanted Haley to still be able to walk up to things & people, not have a box around her. Plus, nobody loses a toe in the water with this. :)

Therapy or Torture?

2009-07-14T23:05:00.002-05:00

George's latest idea on helping Mason to stretch his shoulders was to put all the post-it notes on his head, annoying him to the max so that he would do anything to get them off.

4th with the family

2009-07-14T23:03:00.002-05:00

Worlds of Fun

2009-07-14T22:40:00.003-05:00

We got season passes again this year to Worlds & Oceans of fun. It has been a blast. We try to go at least once a week to one or the other. George got a pass this year too so we've gotten to spend alot of "family" time at the parks. I think Haley's favorite ride is swinging from the rails while waiting in line, (which scares the crap out of me). Collin is infatuated with the go-karts.....he loves riding with his daddy and would spend all day on them if we let him. As for Mason, he likes it all too! I was hoping that by the end of the summer he might be able to ride some things.........turns out, he rides them all just fine and loves it!

4th of July

2009-07-14T22:33:00.001-05:00

Collin is "chasing" Mason in circles.........Mason thinks it's just hilarious!

Fun at the fountains

2009-07-14T22:18:00.002-05:00

We spent the afternoon at Crown Center with some friends last week. Collin & his best friend, Shayla........they are quite the pair. We took the kids to Fritz's for lunch, where the train delivers your food, and then went to play in the fountains. The kids had a blast!

I on the other hand, had my first run-in with some very disrespectful kids, to put it nicely. I know my kids are "different". I know that there will be kids and even adults throughout their lives that will stare, tease, mock, and just be plain rude. Some parents don't teach their kids respect, kindness, and to be tender-hearted. BUT, you will NOT lay a hand on my two year old daughter.........especially when you are a 9 year old boy. There is only so much you can control in your kids environment and that is one of them I will take action on. I could sit by and be disgusted with this group of boys, mocking & making fun, but when one by one they took turns running after Haley & tried to take her walker from her..........it's not going to fly. So that group of boys, from some summer camp group, spent the rest of the afternoon sitting on a park bench. They're lucky the place is covered with cops. I could have taken a head or two that day.

Eden Grace

2009-07-14T22:15:00.001-05:00

My beautiful new niece, Eden Grace, was born on July 1st. She is so sweet! The kids love the new baby, however, Collin was a little concerned when I told him we were going to meet his new cousin..............."but I don't want a new cousin. I want Faith to be my cousin." I had to explain the fact that you can have more than one cousin and then he was ok to go see Eden.

Just like Dad

2009-07-14T22:07:00.002-05:00

The time finally came where we couldn't put off rebuilding our deck anymore, it has become a definate safety issue & we've never liked anything about it. I'm honestly not sure how it even passed code. So George, my Dad, and a friend have taken on quite a task (which they are doing an awesome job on by the way) and you can bet that if there are tools involved, Collin is going to be a part of it. Everyday that George goes out to work, Collin gathers his tools, puts them on just like daddy, and is on his way to help..................or work on his own house during the "down time".

A boy & his food

2009-07-14T21:59:00.002-05:00

Apparently the need to eat EVERYTHING as a boy starts young! The child that gave me so much trouble with learning to eat, now licks his plate clean. Seriously son, where are your manners? :)

Bad Habit

2009-07-14T21:56:00.002-05:00

I seem to have this thing lately of not blogging for a month and then making a dozen posts all at once to catch up. Not the habit I wanted to get into! Why is it that hard to type a few sentences a couple times a week? I don't understand. Oh well, here it goes............

Bummed

2009-07-14T21:51:00.002-05:00

Tomorrow, we should be boarding an airplane and be headed to see all our friends & "family"........we should be going to the AMC convention and taking the kids to Sesame Place, but we're not. The expense was just too much this year with all that we have. We made the responsible decision to stay home and was proud to have that bit of self control with our finances, but now that the time is here............wow, it's tough. I thought we would go every year, no matter what. But with having to re-do the deck, having gone to Alabama, and Mason's multiple surgeries this year with more to come before year-end, it's just not happening. *sigh*

The most beautiful hand ever!

2009-06-12T14:27:00.003-05:00

This is by far, the most beautiful hand I have ever seen! It brings me to tears! To see Mason open his hand and not be balled in a fist, being able to now hold a ball, hold his own bottle, and just plain function is definately one of God's amazing miracles right in front of my very eyes. I can't wait to get the other done!

Random pics

2009-06-12T14:24:00.003-05:00

Garage space needed!

2009-06-12T14:19:00.002-05:00

We went for a walk around the block the other night and came home with a pink barbie jeep. Why does this keep happening?!?! :) The Mayfield family love our children..........they've had this jeep set aside all winter long for Haley, hoping she'ld be big enough for it this summer and she is. She absolutely loves it! So now, we have a firetruck, barbie jeep, and a go-kart.......since Mason is now enjoying that one.

The future of security

2009-06-12T14:14:00.002-05:00

He was supposed to be napping, but came upstairs ready to catch all the bad guys!

Hippotherapy

2009-06-12T14:08:00.002-05:00

This summer, George & I hoped to get Haley started in hippotherapy. She loves horses, but we found out she only loves them when they are plastic, smaller than her, and don't move. We have a friend who has offered her to ride, free of charge, at their home......our friends mom volunteers at a place doing hippotherapy. It's the perfect opportunity. Haley would not get within 3 ft of the horse though. Collin on the other hand...........we couldn't hardly get him off and once he found he could ride all by himself without guides in the circle pen, then he wouldn't let anyone get near him! I'm so happy that Collin loves riding and so proud of what an awesome job he did guiding the horse himself for the first time on one. Hopefully, Haley will learn from Collin that it's fun!

Collin's first T-ball game

2009-05-12T19:37:00.002-05:00

Before & After

2009-05-12T18:19:00.004-05:00

I should probably start by posting a viewer warning.............these pictures are graphic! I took Mason to St. Louis yesterday for his 3 week follow-up appt. They removed 3 of the 4 pins that were put in place during surgery. The one in his thumb has to stay in for another 3 weeks. His hand looks awesome! Gross as far as the stitches, dead skin, & dried blood, but great in terms of positioning. My son actually has a palm! And you can see it.........no fingers stuck in the middle of it. Very exciting stuff around here! He did not like the process of pulling pins whatsoever and neither did Collin. He always sees the kids get casts off & on and never says a word. This was different though.........he sat there very concerned, telling me "I don't want them to hurt my baby", "is it going to stop bleeding, you need to make it stop", and "why are they doing that to him." I felt awful. Fortunately, it didn't last too long and he was very excited to get to pick out what color cast Mason got. He is sporting bright yellow now. Here are the before & after pics:

Pre-op

Pulling the pins

Look at those long fingers!

And no fingers in his palm!

Success

2009-04-20T18:13:00.003-05:00

Today started with a lot of uncertainty and prayer for the best. It is ending very hopeful and promising. Mason's hands have always been a very tough issue for him. He hasn't been able to open them since birth............until today! He now has 4 straight fingers on his left hand and a new tendon in his thumb to increase his function. Things went as well as they possibly could have and I was honestly taken by surprise as the surgeon discussed the procedure afterwards. The concern was that he wouldn't have enough skin to cover the finger once straight, or that the blood vessels wouldn't be long enough to allow proper blood flow to his fingers, or that they would have to cut more tendons and risk losing muscle for a grasp once his fingers were straight. None of this happened though. All went well, we will return in three weeks to remove the pins from his fingers, and in 5 weeks to remove the pin from his thumb. Time will tell what happens from there, but at least for now, we have lots of hope for a very functional hand.

Old News

2009-04-13T15:45:00.015-05:00

It was bound to happen, me slacking on the job of updating my blog. I somehow always manage to get behind on this thing.......I think it's a little something called "I'm so tired I just want to go to bed & I'll blog tomorrow". However, tomorrow comes & goes and before you know it, it's been a month since my last post. That seems to be happening far too often lately so here is new news for the blog, but old news around here. :)

We have converted Haley's crib into a toddler bed - aka "big girl bed" - and she loves it!

She is so proud of herself that she can get into & out of bed by herself. And a wee bit on the sassy side too.

As I mentioned in our vacation post, Haley has a broken leg. This will tell you how far behind I am........we go back tomorrow for x-rays and to possibly get the cast off. You might wonder how she broke it. Did she do the typical 2 yr old thing and jump out of her new big girl bed? Fall down the stairs? Jump off the couch? NO, nothing normal about this break........she was walking. Simply walking, inside, and fell. Since her knee won't bend, her leg had to give somewhere and that "somewhere" was in her femur just above the knee. Don't let her fool you though........she's jumping on the trampoline, climbing stairs, and basically running in that full leg cast. Nothing's going to keep this girl down! Oh, and it makes a nice leaning post.

The kids got to enjoy their first sled riding experience a few weeks ago too.......along with making snow angels.

And of course..........Mason's birthday! He is now the big 1! A bittersweet moment. He's thrilled about it, can't you tell?

Cake thief!

Alabama

2009-04-04T15:49:00.001-05:00

Vacation

2009-04-03T08:30:00.004-05:00

We spent 6 days in Alabama and it was a very much needed vacation! The kids did awesome on the plane, not a problem at all......except watching George & I try to juggle all three kids, suitcases, carseats, strollers, walker......I'm sure it was quite entertaining to all the people watchers. During one take-off Collin proceeded to tell me we were doing a two wheelie. Hmmm?

We arrived Wednesday afternoon and got settled in at Richard & Janet's. People had brought loads of food to their house, cooked us dinner, and we ate entirely too much!

Thursday, we headed to Gulf Shores for the day. The kids LOVED the beach. Haley immediately started digging in the sand & never stopped. Collin was infatuated by it all. Looking for seashells, chasing the seagulls, and running in & out of the ocean. It was undescribable watching him have so much fun......and this was only the beginning.

Friday, we got a call from Chris that he hadn't forgotten a promise he made to Collin last fall when he & Richard were up here hunting.......to take him for a ride in the fire truck. Chris is a volunteer fireman and one amazing guy! Our two families loaded up into the firetruck of Collin's choice and road around town. Collin got to sit front & center, run the sirens, honk the horn, and eventually even DRIVE the fire truck. He was in heaven! Once back at the station, they hooked up the fire hose to the hydrant and Collin got to spray it. It was a really neat experience that hope he always remembers. Friday night, Janet & Richard had a big BBQ and we got to meet all the people who have helped us over the last couple years. They are an insiring and amazing group of people. We were treated just like family and felt like it too. Haley decided today that one week down on a broken leg was enough......that, or she didn't like seeing Sage in her walker and being left behind. Whatever the case, she's was up & running now!

We were supposed to have a big AMC meet-up on Saturday, but the weather at night had not been good all week and we were uncertain what was in store for Saturday. It turned out to be ok, but we had already cancelled it. Instead, we just met with one family, whose son, Reece, has the same genetic form of AMC as our kids. He was such a doll and so full of it.....he was hysterical. It was great to spend some time with him & his family and I can't wait to see them again, hopefully for a longer period of time where the kids can play.

We relaxed and hung out at their place a lot too. Collin enjoyed being around Teyha, their oldest daughter......they were glued together all week and I would have loved to pack her up & bring her home with me. She's such a sweet girl. They played in the chicken coup, chasing the chickens, jumped on the trampoline till they were blue in the face, rode the 4 wheeler, and the most surprising of all.......Collin made friends with their golden retriever, Rosie. The child who runs screaming & crying from the site of dogs, now won't leave this dog's side all week. It was truly amazing and one of the best sites. We were very proud of him.

This vacation was much needed. Not only to get away, but to see Collin have so much fun and to do so many things FOR HIM. It really meant the world to me and I could have cared less about anything else the entire trip except to watch him smile & laugh.

Other happenings

2009-03-11T17:12:00.002-05:00

Mason started pool therapy this week and the common consensus was "why didn't we start this earlier?" He absolutely loved it. The first time ever he actually enjoyed therapy. So now, he will be doing pool every other week, alternating with Haley, who will now be doing more land OT to work on her fine motor & self help skills in preparation for preschool next year. He also had an appointment with one of his orthos this week. We now know that his scapula sticking out on the right side is known as Sprengel's deformity and is commonly related to scoliosis. We're not sure exactly what is going on in his upper back at this point.......we will go to the spine specialist in April and our ortho is joining us for that appt so we can all collaborate. He also wants to go forward with Mason's hip surgery sooner than later. He sees no reason to wait seeing as his is exactly like Haley's and waiting did not heed the results we had hoped for in terms of growth and socket development. So, we're looking at the whole body cast thing again this fall/winter. Can't wait! Ugh! He is starting to talk a lot more. He finally is using his B's, D's, M's, & N's. When he's not actually making sounds, he will still mouth everything and imitate you. It's pretty cute.

Haley is starting to walk on her own again. She is able to journey across the living room without anything and it's only a matter of time before she's all over again. Her limitations lie in not being able to lower herself to the floor without falling or hanging onto something. She still struggles with being able to bend her left leg at the knee for squatting and at the hip for sitting, which she still can't sit on the floor like before. It's getting frustrating to see so many abilities taken away in order to gain others. On another note, she is now in a toddler bed and a very "big girl".

I have applied for the "Littlest Heroes Project" and was accepted. The kids will be getting a free photo shoot from an area photographer. I'm excited! http://www.littlestheroesproject.org/Littlest_Heroes_Project/Home.html

We also applied at Childrens Mercy for financial assistance after learning that our insurance only covered 24 visits to therapy a year, in total. Well, it was mid-February and Haley had been to PT 10 times and OT 6 times. You do the math! We've also struggled with them not billing our therapy to right group as some of it is thru the government program since our therapist is certified with them. Long story short, we were over our visits last year, well on our way this year, and our kids still need TONS of therapy throughout the rest of the year. So on a whim, I applied for assistance........we've never qualified for anything so I wasn't holding my breath. But you can imagine the screams that escaped when I got a letter of acceptance for 100% coverage of all my kids medical needs! Interpretation.........the hospital will cover everything that our insurance doesn't, i.e. therapy! WOO HOO!!!!!!!!!!!!!!!!!

If you ever need a laugh, give us a call and Collin will sing you the song from the McDonalds fish sandwich commercial......."Give me that filet-o-fish, give me that fish......." The one where the fish is hanging on the wall singing. It's pretty funny.

Sneaky Snake

2009-03-11T17:03:00.002-05:00

I was awakened Monday morning to Collin telling me there was a snake on the stairs that he just walked up to get to my room. Having heard this before in reference to a worms, I told him to tell his dad. Afterall, he was awake and could grab it on his way off to work. Collin just wouldn't let it go though and finally George made his way down to dispose of this so-called "snake". The next statement jolted me out of bed faster than anything ever has........"buddy, get back up the stairs NOW". We seriously had a snake on our stairs which Collin just walked on by with no fear. When we asked him about it though he tells us "well, the snake was sleeping so I just snuck by, like this, (as he demonstrates walking on his tiptoes), so I didn't wake him up." It was just a little bitty thing, but a snake none-the-less, and it definately does NOT belong in my house!

Another surgery down

2009-02-13T17:43:00.002-06:00

Mason had his third surgery on Wednesday. Dr. Ostlie repaired his hernia on the right side and brought down his right testicle. Fortunately, the vessels were long enough to just be put in place and no vessels had to be split. He expects that everything should turn out fine. We go back in 4 weeks to make sure that the testicle has survived. If all is well, we will schedule surgery again in 6 months to bring down the other one and repair the hernia on that side if there is one. This was by far the easiest surgery........he seems to be back to his usual self already today. I won't lie though, yesterday was a bit unnerving. He couldn't keep anything down, his vomit started getting blood streaks in it, his fever wouldn't break, and the mucus was so thick from irritation being intubated that he was choking on it, as a child would choke on food. He slept for 14 hours though and woke up a whole new person!

Our next surgery is scheduled for April 20th to open his hands. We are just doing the left hand first. Good news, our OT got his hands opened enough to see the tendon thru the skin pulling all the way down thru his palm.........why is this good news? That is the tendon that connects to the first joint. If we can cut that one and it releases the finger, then he will still have the second tendon that attaches to the joint closest to the fingertip and THAT tendon can completely control all finger function. YAY! So here's praying that it's the first tendon that's the problem in all his fingers!

What did I miss?

2009-01-31T10:28:00.003-06:00

Haley has been notorious for not practicing skills, showing now sign of accomplishing new tasks, and then all of a sudden one day she is fully capable like she's been doing it all along. She's still doing that and apparently Mason has taken notes. They don't learn things slowly, step by step, instead they climb Mt Everest in a day. So, somewhere along the way I missed the fact that Mason is capable of sitting and Haley can walk.

One day in PT, we worked on standing with Haley in her KAFO's, for about 5 minutes. I never worked with her again on this that week, but suddenly she was capable of pulling up at the couch and standing herself........then she proceeds to ask for her walker. To humor her, I got it.........she decided to humor me and actually walked. She is loving having her independence back and so am I. All her therapists are amazed as noone thought she'ld be back on her feet so soon.

That same day we worked with Mason on being able to sit. He did so with very little to no support for about a minute. The next day in therapy, we sat him up and the OT was going to time him........five minutes later she just picked him so we could move on to something else. :) Little stinker! We also decided to try him in his stander, typically kids only last a couple minutes the first time, but of course not Mason. He instantly loved being upright and stayed there for a good 15-20 minutes playing. I'm so proud of the both of them! It's been a great week of breakthroughs and much needed on my stress levels.

ABC's & D is for Doctor

2009-01-17T10:28:00.004-06:00

Since pulling Collin from preschool & not re-enrolling him elsewhere this semester, I've felt compelled to make sure he is still learning. We've just been doing little things while playing to incorporate education. I never really know how much of it "sticks", but the other night, I found out just how much he IS learning. We sat down to play the bean bag toss game........each bean bag has a letter of the alphabet on it and are all different colors. He knew all his colors, which he has for awhile, so that was not really a big deal to me. What I was most impressed with was the fact that he knew all but 4 letters of the alphabet, with no help from me. And the 4 he didn't get, were rightfully missassociated........for example, he was certain that the Q was an O and the J was an L.

Haley picks up on all this as well. She is starting to identify colors more consistently and sent George and I into shock last night while playing candyland bingo..........telling us she needed the "yellow octagon". She now has her edition of the ABC's as well. It goes something like "A-B-C-H-I-J-L-MIN-O-P-Q-R-X-Y-Z".

We spent an entire day at St. Louis Childrens hospital this week as well, seeing all of our doctors in one day. It makes for a long day, but so nice to get it all done at once. Here's how that day went:

First on the schedule was Dr. Goldfarb, our hand surgeon. We have all come to the conclusion that it's time to schedule surgery for Mason's hands. He has made some progress from birth, but not much in the last 6 months and has started to adapt........picking things up with a scissor grasp between his thumb & index finger. He just can't open those fingers, no matter how hard he tries! Dr. Goldfarb won't know to what extent he will have to cut tendons and release joints until he gets in there.........a pin will be put in place afterwards for awhile to keep the finger straight. We'll only do one hand at a time and see how it goes as the hands are the hardest part of the body to correct surgically, and within the hand, the fingers are even harder with the thumb being the easiest.

Next up was Dr. Dobbs, our foot surgeon. That visit was pretty "boring". I like boring when it comes to these visits, it's a good thing! Bottom line, all is well with both kiddos feet and continue with the braces and stretching. YAY!

Last was Dr. Leonard, our neurosurgeon. All was well with Haley's follow-up. We'll take her back in a year, unless we see signs of retethering. As for Mason, it was mainly good news. He sees no sign of spinal cord tethering, however, since they did the ultrasound in the NICU and have reports of the possibility, they can't ignore it. The only way to determine for sure is to put him under for an MRI. Haley never had any signs of tethering either, so who knows. I'm praying for the best outcome there though. On the bright side, Dr. Leonard will work with Dr. Goldfarb on the day of his hand surgery to only put Mason under once. The plan will be to put him under for the MRI and then move him straight up to the OR from there. Then Dr. Leonard can review the results while he's in surgery and go from there.

Also this week, we went back to Dr. Olney, our hip surgeon. He said Haley's hip looked great and was doing good. She is off all restrictions and even started walking in the pool this week, unassisted. That was a huge step for her! One major battle though is working out the stiffness in that hip. She still can't sit up as she can't bend far enough at the waist. Soon enough, it will come.

I'm back!

2009-01-06T22:03:00.004-06:00

I've been meaning to sit down and blog every night for about two weeks........I sit down, look at the computer, even open up my blog page sometimes, but just don't feel like writing. Not sure why exactly. My only excuse is that I'm just too tired.......story of my life lately. The sad part is, it's not just that I'm too tired to blog, I'm too tired for just about anything and everything, physically and emotionally, which isn't good. Note to self.......slow down, enjoy life, start feeling again, and get my priorities straight. I've bulldozed thru too many days and set up too many walls that need to come down........it worked for awhile, but no more.

Between hospital stays, surgeries, rehab, illness, and everyday life, it's been a whirlwind around here for way too long. Haley is now in rehab four days a week for the next couple months, Mason twice a week, then throw in a trip to St. Louis next week and numerous other doctor visits coming up.......including the neurosurgeon to discuss scheduling Mason's MRI for spinal cord tethering, possible surgery, revisiting the hand surgeon, scoliosis check-ups, hip check-up, RSV shots, and whatever else is on my schedule that I can't remember right now and that accounts for my lack of contact with the outside world (sorry to all those I haven't gotten back to, one day, I will, I promise) and a weeeeeee bit of stress. I think it partly plays a role in the whole tired thing too. :) I did get one break though........since Mason had pneumonia around Christmas they had to cancel his surgery for this past Monday and reschedule for February. He has to be clear for 6 weeks prior to surgery. I was kind of happy to hear that news. My goal is to survive the next two months and pray things start to slow down a bit......or at least get a more managable schedule.

Other happenings.........we got a wii for Christmas and Collin is officially addicted to Deer Drive. I now see deer running across fields every time I close my eyes, literally. It's awful. His other favorite, Rockband. George & I are semi addicted to that.......ok, ok, totally addicted. We've already unlocked every song on there and to watch Collin "jam out" with us is completely hysterical at times. We even caught him playing the guitar behind his back! Haley got a Dora the Explorer dollhouse and it is the greatest thing in her life right now. She absolutely loves it......putting all the characters to bed, giving them showers, and setting them up to eat. I thought that maybe a dollhouse would be a little too old for her, but I was wrong, it's perfect.

George & I have decided to get him into sports next season so we had a conversation with him tonight about it:
George - "Collin, would you like to play baseball?"
Collin - "Yeah"
Me - "How about soccer?"
Collin - "No"
Me - "Basketball?"
Collin - "Well......yeah........I think that's a great idea"

So baseball (George's sport) and basketball (my sport) it is......we have taught him well!

Other things he has learned that aren't so great........I came up behind him today and gave him a big hug, he proceeded to pass gas, laugh, and tell me he "just wanted to get away". Little rat!

Haley is doing much better over the last couple days in therapy and moving her left leg (the one that was put back in place). Her pain levels seem to have come down tremendously. Up until a couple days ago, we didn't see any movement in it except for a little in the pool and she screamed anytime we touched her.......actually, just at the sign of us possibly touching her sent her into tears. So today, I was very excited to see her cruising the sides of the pool and walking with the kickboard for balance. She also was able to sit on a bench and balance herself, but the poor thing........her whole body trembles she works so hard at it. She has a lot of strength to gain back, as well as range.......she is very tight, all over. She also has new KAFO's for night wear to keep her knees stretched out. The orthotist put a rush on them and the two week wait turned into two days.......Thank the Lord!

Mason surprised me in therapy today as well. We have figured out that his inability to sit on his own is due to the fact that he is so top heavy. His torso is so much longer than his legs. He has the strength to sit, just not the balance so his OT made a board with a strap thru it so that when he sits on it, we just strap down one leg and voila, he can sit on his own.........such a simple thing can work wonders. He just needed that one point of stabilization.

I know there's so much more that has happened in the last couple weeks, but I can't remember for the life of me what it was. Terrible huh? Oh well.........I'll just have to get better at blogging......add that one to my list and it MIGHT happen. :)

Happy New Year!

Life

2008-12-20T08:33:00.002-06:00

Life.......it has to slow down at some point, right? I have felt like lately I wake up and rush thru the day as fast as I possibly can just to get everything done. I'm drained!

Haley finally adjusted to her body cast just in the past couple weeks.......she gets it off on Monday. Please pray that it's not as painful adjusting to being out of the cast as everyone has told me it is.

Mason has not had a single cold, cough, or virus of any sort in his 9 months.....until just this past week. Wednesday night he had his 9 month well check, weighing in at 13 lbs 2 oz and 25 inches long, he was healthy as could be with the exception of a newly developed annoying cough..........36 hours later he had pneumonia in both lungs. I took him back into the doctor Friday morning after his cough had gotten worse and he started running a fever. His O2 levels were at 95%, RSV test was negative, he got a shot, a script for antibiotics, medicated nasal drops, and they deep suctioned him to pull a lot of the mucus out. He is not handling the mucus very well and keeps puking with his coughing. Hopefully he turns around quickly!

I have officially pulled Collin from preschool. I have put him on the wait list for our school districts preschool to be a peer model so hopefully he will get in there with Haley next year. If not, I have put him on a couple other waiting lists that I visited the other day.

We're all ready for Christmas.......the kids are excited. Haley, who is deathly afraid of dogs and I mean TERRIFIED of dogs, no matter the size or mannerisms.......will only tell you that she wants a puppy for Christmas. LOL! Crazy girl! So of course, I got her one. It's a little furreal puppy that rolls over, hopefully it doesn't scare her. :) Collin, well, he just wants everything. We went shopping the other day with my grandma..........he walks into the toy store, goes right up to a big race track, says "I guess I'll take this for Christmas" as he loads it into the cart. Oh I laughed......not quite how that works son!

Despite all the craziness, I did get away for a couple days. My dear husband plotted with our friends in Alabama and sent me away for 3 days to visit Janet. She had no idea and was shocked to say the least. We headed straight from the airport to Gulf Shores, got a room on the beach, and relaxed.........no kids! It was wonderful and I can't wait to go back & take the kids in March.

Last, I want to ask for extra prayers for my AMC family. So many are going thru a difficult time right now, some in dealing with their kids, others with their parents, and some having many trials with both. Just say a small prayer asking God for guidance and peace for my fellow AMC mommies. Thank you!

Recent Pics

2008-12-02T22:14:00.002-06:00

Haley in good spirits!Collin going on his first hunting trip with Daddy.......video soon to follow.
My sweet Mason......happy boy!

Where does the time go?

2008-12-02T21:41:00.002-06:00

Seriously! I've felt like I've been drowning here lately, but finally, FINALLY TODAY, we had a "normal" day, kids are back on schedule and I got caught up on a few things. *huge sigh of relief* The past couple months have just been, well, out of whack!

Haley is sporting her new blue cast, not with much of a smile though. She seemed to take a downward turn on the pain situation after her cast change and is still struggling from time to time........basically anytime we move her, change her shirt, or change her diaper. If I just leave her be, flat on her back, she's happy with that. 3 more weeks! Then the fun of rehab starts! Tomorrow, we have her first IEP meeting with the school district to discuss transitioning her from home therapy to the school program/preschool. I have no clue what I want to do with that......send her for therapy & preschool, all week or just a couple days, nothing at all? I dunno. I had this bright idea that I would send her to Collin's preschool and just keep private therapy at the hospital, but not having such great luck with his preschool.......so I'm back to square one for both kiddos!

When I enrolled Collin into his preschool, it came highly recommended from everyone I spoke with (including representatives of the school district). Their main philosophy is to learn thru play. Sounds great! There's enough time in life for sitting down and doing worksheets. In my head, I'm thinking educational play thru fun activities and group/structured play. Something to give him some socialization with other kids, but more importantly learning how to take instruction, follow directions, some education, and deal with life outside of "mommy". Nope! I think it's pretty much a free for all with teachers there to help the kids "socialize" who don't ever play with other kids and also to discipline, no, "redirect" the others who obviously haven't had any discipline. The first two weeks were spent getting one little boy to stop hitting and pushing every kid, every time he walked by them. Nice huh? I was told they have spent the entire semester on social skills and learning how to just "get along". Seriously? It has also taken them all year to be able to form a line and walk down the hall to music class. I'm not getting that. The other thing they will work on is fine motor skills, by giving them the tools to learn with. Do parents not let their kids use scissors at home? Apparently this is a big deal to get kids to be able to cut.....I never knew! And to play with playdo? And use crayons, skinny ones, instead of markers? I don't get it. Do parents not have ten minutes to spend with their kids on simple tasks such as these. It seems pretty brainless to me. Afraid of the mess? My advice, don't have kids. Well, Collin doesn't need socialization help.......he makes friends easily and jumps in when he feels comfortable doing so. Sure he can be shy at times, but once he reaches a comfort level in the situation, he's all in. He knows how to stand and walk in a line, he knows how to sit on the floor and listen to a book........I don't understand how parents don't teach such simple tasks as patience and listening. My two year old knows how to sit and listen to a book! There is no "letter of the day", no work on writing, letter association, colors, structure, etc........except for 15 minutes of circle time and story time. I just can't pay for a glorified play group, especially when the only kid he ever says he plays with is someone who we get together with all the time anyway. That said, I am now on the hunt for a new preschool.

On a good note, Mason had an awesome past two days in therapy. Both days he hung out on his tummy for at least 10 minutes.......WITHOUT CRYING! Granted, the therapist had to hold his head up, but beggers can't be choosers! Also, when provided stability through his knees/legs, he has the core muscle to sit up on his own and keep his balance for a few minutes at a time. I was impressed!

Finally, some "down" time

2008-11-19T13:29:00.004-06:00

Finding time to update lately has been near impossible. I finally have a few moments though while waiting for Haley to get out of the OR once again. Today she is getting a cast change as well as some manipulation of her hips & knees. They will try to stretch her a little more, if that’s possible. We spent all morning trying to pick out a new cast color and her response, a hundred times over, was “no thank you”. At one point I got her pick out a color for her puppy though so we went with that……..blue. That seems to be her favorite color anyway.. She always chooses blue for everything. Collin wanted blue as well, so blue it is. At least she has long curly hair and won’t be mistaken for a boy! Four more weeks in this cast and then we’ll have to see whether she needs to be braced for awhile afterwards or not. The last two weeks have gone MUCH better than I ever imagined it would. Once we got thru the pain, she has been just as content as can be and the same happy little girl as always. I’m in complete shock to be honest. God has a way of always taking care of my babies…….speaking of………he has once again blessed us through our neighbors.

We’ve had neighbors that donated pizza for our AMC get-together, ones who give my kids power wheels on loan w/ the option of “upgrading” and changing out whenever they want, ones who offer babysitting, who cook for us, and now ones who have been ever so generous financially. I was not home at the time, but they came by with an envelope of cash and a story that about broke my husband into tears. They once were in a situation of need when their kids were younger…….a fundraiser was held to help them thru on the condition that when they got older and were in the position to do so, that they would give to a family they felt was in need…..which turned out to be us……one one condition, that we pay it forward as well. I can’t wait to be in a position to help another family one day and bless others in the way that we have been blessed. I’m truly excited for that day.

So with that………I had been really struggling & stressing over how I was going to get around with Haley in a body cast and Mason. He still has therapy every week, other doctor appointments, Collin has preschool, and just general getting out to save all our sanity. My dilema…..Haley doesn’t fit in a “typical” stroller since her legs are so far apart & she’s getting to be rather long, she doesn’t fit between the side bars that run down strollers………she also needs to be flat since she has no bend and typically only one seat reclines meaning Mason would not have a seat since he can’t sit up. But I actually found a double stroller unlike the usual, it was perfect. Both seats recline, no side bars, roomy, easy to steer, many seat options, etc. It was my option, not just for these next few weeks, but great for a very long time of use that I knew it would get…….plus Mason will be going thru this same thing in a body cast in another year……..all for a deal breaking price of $200. I’ll just have to suck it up, that’s what I concluded. Until our neighbors showed up a couple days later w/ an envelope stuffed with $200. So you guessed it, we bought the stroller. My loving hubby insisted that’s what I should use the money for. Haley loves it, as do I!

Other things going on………Mason has been golden since coming home. (knock on wood) I honestly think that putting him on miralax and getting his constipation issues under control did the trick. I've been asking and asking to get him off the lactulose, that I have never been happy with it and swore it was part of the issue, but nobody would humor me until halfway thru our hospital stay. He always seemed to be having more tummy issues and gut pain, rather than reflux. With all the reflux tests coming back normal, that furthered my intuition. We go back to the GI doctor tomorrow to discuss things. He also has an appointment with his critical care surgeon tomorrow to follow up on his diaphragm plication and to schedule surgery in December to fix his hernia and bring down one of his testes. Tis the season for surgeries! Oh well, might as well get it all out of the way at once right?

Since all of our hospital stays/surgery began, almost 4 weeks ago, Collin has been just as much a trooper as the other two. He has had to be couped up and put on hold more than I care to admit. He's been in great need of energy release and a playmate! He's been very patient though and still just as happy go lucky as always........just going with the flow. Once again, he's my big helper in ways that he doesn't even comprehend.

Thank you Lord, for we are truely blessed.

Family Pics 2008

2008-11-13T13:38:00.001-06:00

We're all home

2008-11-10T09:43:00.002-06:00

It has been an interesting couple of weeks around here. Mason finally made it home late Monday night after his week long stay at the hospital. He's still on nexium and seems to be doing much better. The vomitting has ended, he is eating (even waking thru the night to eat now.......I don't think he's going to be needing any appetite stimulate like they were talking about), and he's only had a handful of screaming fits since we've been home (which I'm still concerned with, but we'll deal with it for now). His PH study came back normal.......he showed to have 2.5% levels of reflux, normal is 6%..........translation, reflux is not our major issue here. The scope showed all was well in the esophagus, no reason he should be refusing to eat, however, there was some inflammation in the upper part of the small intestine. We are still waiting on biopsy results as well. We go back to the GI doctor on November 20th and try to figure things out from there.

We were home one day before taking Haley in on Wednesday for her hip & knee surgery. Doc told us it was one of the toughest hips he's done, but is confident it will stay. They had to do a femural osteotomy (shortening of the femur) and put it back together with plates/screws. They also did a derotation of the femur to get it in place. In order to hold it in place, they had to make a cut in the pelvis, turn it out, and fill in with bone from the donor bank so she now has a socket. Along with the hip, they also did hamstring lengthenings on both knees to straighten her legs. She is casted completely straight......well, as straight as they could get her for now. We go back on the 19th for a cast change to straighten her knees and hips a little more. All things considered, she's doing quite well. She was able to come home Friday afternoon and we have survived the weekend. She's one tough little cookie! The next 6 weeks will be an adjustment......positioning is our hardest task. Most kiddos in a spica cast can at least be propped up in a bean bag, but they have some bend in their hips/knees. For Haley to be upright, she would have to be standing. To get out, she will have to ride in the wagon, but then I'm not sure what I'll do with Mason. And getting her in/out of the van is another story. She has to lay flat across the back seat in some array of seat belts made into a harness (it's quite the contraption)........I think I'll have to load her from the back, seriously. BUT, it's only six weeks. It'll be over soon!

So that's that. We're just trying to figure out how to do simple daily tasks now, entertain, and manage pain.

Update on Mason

2008-11-02T08:55:00.001-06:00

We're still at a loss. We've done the swallow study, the endoscopy, 24 hour PH study and still the only thing they can say is reflux. he has had reflux meds thru his IV (nexium) and is now on continuous feed thru the NG tube which is supposed to keep acid from building in the stomach and not "overfeed" him.......still he continues to vomit and has started his screaming fits again. he was very relaxed for the 24 hour period following general anesthesia, playing & smiling. but that's now gone. we have asked about pyloric stenosis, which is a narrowing of the opening from the stomach to the intestine and causes excessive vomitting.......they said no, it would have shown up on the scope and/or swallow study. we have asked about switching formulas.....they said no, that wasn't likely all this was. so what is it? how do we "fix" it? Nobody seems to have that answer, still.

The power of persistance

2008-10-30T23:28:00.002-05:00

Since being admitted on Tuesday not much has happened in the way of determining what is wrong with Mason. Nothing has been done aside from the swallow study, in which the GI doctor needed to consult with the doctor that did the test as there is only so much info you can get from pictures. However, that doctor wasn't in Wednesday so they finally got to consult today. GI determined that he needed to have a scope put down thru the esophogus, stomach, & small intestine to get more answers and see what they could find (i.e. lesions, ulcers, damage from reflux, or whatever else is the problem). They also want to do a PH test to determine the level of acid in his stomach.......basically "how bad is the reflux?"

Also, Mason is still refusing to eat and screaming in pain so they put a feeding tube in today.....he has lost more weight just since being in the hospital. He screamed still as they fed him thru that........he was perfectly content with the tube being there until they put food thru it. He screamed all day, as he has for the past week+ and has only taken about 10 oz in the last 3 days on top of puking most of that up AND now not sleeping. The docs saw no reason for quick action though in finding out what the problem is as they tell me that they won't be able to do any tests until Monday. That's the first opening they have and I should be happy as "that's pretty quick for them and not as long as what others have had to wait before."

Somehow though, I just didn't feel so lucky. As a matter of fact, I was down right pissed about it and found it to be ridiculous. A 7 month old not eating, screaming in pain, losing weight, not sleeping, and "that's ok." (especially given his history?) Their solution - give him pain meds to get him thru the weekend. My solution - do the test, now, not Monday, now. Take care of my child like I brought him here to be taken care of, for the third time! I am perfectly capable of holding a screaming child in my home, but shouldn't have to watch him suffer in a hospital of all places.......a place where they should be helping him! The plan - do the tests first thing in the morning. Amazing how they could all of a sudden fit him in. Persistance. Ask the docs into your room 3 times in a day to deal with your screaming child and take note of his behavior for themselves.......apparently they finally "got it." So Mason is going into the OR tomorrow and hopefully we'll have some answers and a game plan. AND, maybe now he'll get to come home before Haley gets admitted next week.......please Lord, just give me one day home to prepare! They tried to tell me "well, you know that she'll be on this same floor, just on the other side" - like that makes it better? Seriously? Some docs just don't get it when it comes to the patient side.

Finally, someone listened

2008-10-28T23:15:00.002-05:00

Sunday evening into Monday, Mason decided to go on yet another feeding strike.......this one lasting 26 hours. One of our PT's strongly suggested KU Medical Center - "they have a strong GI department, Dr. Himen is wonderful and many of my patients have had much better results w/ him than at Childrens Mercy." AHHH!! Finally, my answer! Our pedi sends us to KU Med ER for this episode. After two hours in a very scary waiting room, two hours in a room w/ a screaming, puking baby getting IV's, blood draws, & x-rays (no obstructions were found), another hour waiting on the pediatric team to get our long awaited answers........and we hear, "sorry, we no longer have a GI doctor here. He left a couple months ago and is now practicing in New Orleans." (flames are coming out of the top of my head, I'm sure of it) as the doctor apologized, over & over, and in the end gave me his name & personal cell phone number in case we had any trouble getting into the Childrens Mercy GI clinic promptly. George claims he had a crush on me, I think he feared for his life. After Mason got filled up on his fluids we came home at 1am, slept a few short hours, and headed to Mercy first thing this morning.

Haley had therapy and I discussed our issues again w/ my OT.......who sent us next door to the special care clinic where he was seen when on oxygen.........who sent us back downstairs to the ER. The doctors we had today finally decided that there was an issue and he needed to be admitted until it was figured out. THANK YOU!!! They were so polite as to ask "if I was ok with admitting him and running some tests to figure things out?" HMMM, let me think on that one? No, I just like visiting ER's on a regular basis. And my favorite question of the day......"do you think the prevacid is working?" Really? You seriously just asked me that? Again, yeah, I just like visiting ER's. It really took a lot to hold back from just laughing at him.......I kindly replied "we wouldn't be here if it was working." (genius)

Anywho........Mason is still struggling, often fussy, vomitted a couple more bottles today, but kept some down this evening and even had a 20 minute happy play time before bed. They did an upper GI swallow study. He wouldn't drink the chalky, nasty bottle (can't blaim him.......he was a little pissed about being strapped down to a board w/ a machine over the top of him) so they had to insert a feeding tube. He of course vomitted that all up. They didn't find any anatomy problems, things went down well, but they did see some reflux. Not sure how they differentiate that from the vomitting? We will see the GI team tomorrow and hopefully get more answers, or at least rule some more things out. They told us to be prepared to be there thru the weekend or longer. Hopefully he makes it out before next Wednesday (Haley's supposed to be having her surgery). We just might end up with a "family room" at the hospital. LOL!

Reflux?

2008-10-25T07:54:00.002-05:00

We didn't get as far as we had hoped in the ER. The doc would only say that she thought Mason is battling reflux and put him on Prevacid, again. We pushed to do more, but got nowhere........it was almost like she didn't want to treat him and wanted us to take him back to docs that were "familiar w/ his condition and knew him" as she kept telling us. Which are the docs that sent us to the ER. I feel like we're just running circles. The ER doc wouldn't even tell us how much he should be taking in a day based on his weight/age......."that's a question for your doctor overseeing him." That was the common answer to all our questions. And yes, this was our Childrens Hospital ER. My OT is the only one so far who has truely helped us and given us any insight.........she wanted him on reflux meds, upper GI study, and possibly a feeding tube so we can figure out if the problem is the stomach or btwn the mouth & stomach.........noone else seems concerned. For now, we see if the prevacid does anything, hope that he starts eating, stops losing weight, stops screaming his head off 24/7, and one of his doctors starts to give a crap and do something. Hopefully on Monday our pediatrician can get us into the GI clinic and we'll start getting somewhere.

Headed to the ER

2008-10-24T11:16:00.004-05:00

Now after speaking w/ our OT, which our pedi recommended we do, and then back to the pediatrician....they have decided Mason's feeding issues are a bigger concern than originally thought and we are headed to the ER (since GI couldn't work us in to their regular clinic today). Please keep Mason in your prayers that we figure this out.......it maybe something as simple as major reflux and needing to switch meds (he has been on reflux meds before and it didn't seem to help so we'll see). They are also talking a temp feeding tube until we figure things out. They just know that he can't keep refusing to eat (he went 21 hours between feedings yesterday to today) and taking in only about half of what he needs to.......not just for growth reasons, but he can't stay hydrated that way.

Scoliosis update & feeding issues

2008-10-23T21:16:00.003-05:00

Haley and Mason had check-ups Wednesday for their scoliosis. Haley's x-ray showed that she had no change, except maybe some mild correction. YAY!! That was good news since at last check his numbers showed that she might be getting worse. Mason's x-ray showed that he has a small curve (that was not evident on any other previous x-rays from the NICU)....his is a "C" curve (how Haley's started) as opposed to Haley's now "S" curve.

I learned two new things this visit:
1 - an "S" curve as small as Haley's (also referred to as a "balancing" curve) is considered a perfectly normal spine that she can go all thru life with and no problems or treatment needed.
2 - apparently any type of thoracic surgery such as a diaphragmatic surgery, heart surgery, etc. can cause a small curve in the spine and is commonly found in relation to surgery. So now the question is this........is our kids scoliosis due to their syndrome or their diaphragm surgery? Hmmmm??? I'm praying for the latter!

At this appt we were also referred on to neurosurgery to look into getting an MRI of Mason's spinal cord to look for tethering. His ultrasound in the NICU suggested it was tethered. We will see neurosurgery in KC for consult and to establish a relation there, but will probably go back to Haley's neurosurgeon in St. Louis if indeed we need to do surgery.

It's been a very long, tiring week. Mason has been giving us more and more eating trouble. We have battled feedings from time to time, but it has taken a turn for the worse. He is hardly eating & perfectly content not to........taking 5-6 hour naps and 12+ hours thru the night on hardly anything, screaming fits, constipation despite being on a prescription for it, puking up whole bottles every now & then.........it's been hell to be quite frank for a few weeks now. I'm about at the end of my ropes w/ it all. The pediatrician gave us a new formula today to try........which he completely refused to take and is now down for the night after last eating at 12:30 today........and he's fine with that. I, however, am about on the verge of a breakdown. His surgeon looked at his chest x-rays from the scoliosis check and everything w/ his diaphragm/lungs looked fine, which is a big relief as I was worried the stitches broke free and that's what was causing his love for sleep. Next step is to talk w/ our OT and get set up w/ a feeding specialist to try and figure him out. Thru this all though (w/ the exception of his screaming fits at night) he is perfectly happy.......he pukes w/ a big smile on his face! Little stink! Changing that carseat cover & belts is enough to drive anyone insane! (He's been very nice as to only puke in the car when we're headed somewhere........nice huh?) I'm off to bed and praying Mason will decide to eat in the morning.........AND keep it down.

St. Louis trip

2008-10-19T00:30:00.002-05:00

We travelled to St. Louis again this past week........it was a whole family affair this time and we snuck in a little fun. After the doctor appointments Thursday morning we took the kids to the zoo. It was a perfect day for it.....all the animals were so active. The snow leopard about gave George & I a heart attack. While trying to find him, certain he was just sleeping under a bush somewhere, he jumped up out of nowhere onto the rock right in front of our faces. We jumped, literally. After the zoo, we went by and visited some friends and there new baby......he was so tiny and the cutest little thing! George had Friday off too so we finally got new family pics done that now include Mason (YAY!) and we took the kids to eat at T-Rex w/ all the dinosaurs. They loved it!

As for the doctor appointment.......Haley got her new Dobbs bar for night wear. She was outgrowing her old one, but I'm hoping just a few more months and maybe she'll be released from it. Mason got his bar adjusted so hopefully all the pressure points are gone now. We also took Mason back to the upper extremities surgeon to evaluate his progress in the past three months. Though we haven't seen a tremendous amount of improvement, the doctor still wants to wait on surgery........he consulted w/ the other docs in the office and they all agreed that waiting was best for now. The doc was going to have his OT at Shriners call our OT to brainstorm together and make sure we're doing all we can to get his hands open. For now, we're still just splinting and stretching. We'll go back in January to see what progress has been made. He's wanting to hold off surgery as long as possible so that his hands will be bigger, easier to do surgery on, easier to splint post-op, less invasive the more progress he makes on his own, and the better chance of a successful surgery.

I'm not wanting to just throw Mason into surgery, but I have a hard time watching him struggle and get so frustrated w/ not being able to use his hands like I see him trying to. Our OT feels like we're holding him back at this point by not doing surgery and that she's done all that she can. His fingers are just too tight & he has skin webbing that splinting cannot correct. I understand the logic in waiting though. I know it's the best thing to do, but sometimes it's hard to just "wait and see". Pray for patience.......I need it.

AMC Meet-up at the Rudder's

2008-10-13T23:05:00.002-05:00

On Saturday, October 11th, we had a get together at our house for all the area families affected by AMC. I think we had 6 families that were able to make it and about 4-5 more in the area that had prior commitments or health issues........hopefully they'll make it to the next one. Our neighbor, who owns our local pizza shoppe, donated lunch for all of us. It was awesome! It was a beautiful day, couldn't have asked for better weather. The kids had a great time and all us parents got to share a lot of info and experiences. All in all, I think it went great and I'm looking forward to holding another one next spring.

Prayer Request

2008-10-13T22:53:00.002-05:00

We need some prayers for our friends in AL (the ones that came to visit us when Mason was born). Janet's father has been in the hospital for almost a month now and is very, very sick. Please keep them in your prayers for me, especially Janet's mom. It's a rough time. That said, our trip to AL this week is off. Hopefully we'll make it down there next spring........March is the plan now.

More good news

2008-10-01T22:27:00.002-05:00

Where to begin? I guess my major shocker of the week came from Mason. We were in OT this past Tuesday morning when his therapist goes to get this little table and proceeds to sit him up at it on the floor......and he sat there, propped w/ his arms on the table. I couldn't believe that he could balance himself like that, not for a second had the thought of ever sitting him up & taking my hands off him crossed my mind. My thoughts to myself were, "what in the world is she doing, he can't sit there." Little burger proved me wrong! To which I realized, I'M HOLDING HIM BACK. I think he can do a lot more than I have given him credit for.

Other major proud mommy moment that brought tears........I had to take Haley to the doctor tonight (she's had a bad cold/cough & turns out a little fluid on her lungs.....precurser to pneumonia so she's on meds now.......anyway). She walked out of the room, down the hall, picked out a toy, then out the door, thru the waiting room, thru the lobby, and out to the parking lot.......all by herself w/ tongue depresser in one hand and a Dora sticker in the other. I have dreamed of the day she could do this and it's finally here!

Collin has turned on his charm yet once again. Our neighbors w/ all the power wheels have been talking about how he's probably about to outgrow the jeep they gave him last summer.......we have been over there driving all the cars around the last few days along w/ several of the other neighborhood kids. I come home tonight and there is a nice new fire engine parked in our garage complete w/ working lights, sound, water hose, and cb. He's so blessed! Haley loves riding with him too.......they are a site in that thing!

I have also met another family, in LA, that has an 8 1/2 month old son w/ Escobar syndrome......same as my kids. I found her searching blogs, sent her an e-mail, and ended up talking that same day. Reece is such a cutie and SO much like my kiddos......it's amazing. Actually the amazing thing is how easily and quickly they got a diagnosis & testing done. I'm so happy for them that they didn't have to go thru what we did. The best part is.......I'm going to get to meet them in a couple weeks! Just so happens that they only live a couple hours away from our friends in AL, whom we're going to visit this month........sooooo, while we're there we're all going to get together. I can't wait!

Oh, and I start my new job tomorrow!

Pumpkin Patch

2008-10-01T22:15:00.001-05:00

Lending a helpful hand

2008-10-01T21:53:00.001-05:00

Great day

2008-09-25T21:15:00.004-05:00

Today was a great day. It started out taking Mason to the surgeon.......one of his testes is starting to descend on its own. Why is that such a big deal? Even if only one goes down by itself, that means only ONE surgery to bring down the other, not two. That also means there won't be a chance that we would have to travel to Cincinnatti for surgery as well. Our surgeon wants to wait till closer to nine months of age to give him some more time and he will do the hernia surgery at the same time..........so December is surgery time for Mason.

I had my "interview" today w/ E-Shipping (company my BIL works for), which seemed more like a meeting to further explain the position and meet everyone in the office.........I will train next week, get my official offer letter, and start work. YIPEE!!! I'm so excited about this opportunity. It's a very young, vibrant office.....very family oriented. I'll have a pretty flexible work load to accomodate our needs on the home front and understanding managers. The position is more on the clerical side, but that's what will work great for me & what I was in search of. That said, there is also a lot of opportunity for growth. I'm excited not only to have something to help out financially right now, but to have a foot in the door and future there for when the kids are all in school.

To top off my day, I received a phone call from a social worker at Childrens Mercy. She has been working with a family in the NICU who just had their third child.......she was born with arthrogryposis. She went on to tell me what a neat family they were & they were wanting resources and someone to talk to.........her and the social worker in the Rehab clinic decided our family would be perfect to help them. I was so honored to be thought of in that manner.

All of this today sort of sent me into a revelation. I never imagined 2 1/2 years ago that "this" would be my life. It's so easy to get caught up in all the negative, to feel sorry for yourself, and just be down right depressed when you deal with all that our family does. I've always tried to keep my head above all that, but of course their are "those other days". BUT TODAY, was different. I'm excited about my life and the direction it's going. George & I have always talked about how there's got to be something more out there........we want to make a difference, not just live the ordinary life. God has given us that opportunity thru our children. Without them, we would have not met so many amazing families all across the country. We would not have been called upon to help this family in need while they struggle in the NICU. We would not have the opportunity to help in planning a national convention for kids w/ AMC where so many life changing experiences take place (which shame on me, I have to call MB and see what we need to get going on). I would not have gotten this job opportunity. I would still take everyday life for granted........not rejoicing in all the small accomplishments of my children's lives. There are things in life that you cannot change. I just had to learn to accept it for what it is, embrace it, and make the most of it knowing that it is all in God's hands & part of his plan for us. As my son told me the other day......."mommy, i made up a new song. wanna hear it?" and he started singing "This is the Day that the Lord has Made."