Monthly Archives: September 2012

15 months!!

No, we did not fall off the face of the planet! haha And nothing tragic has happened with Brax, just super busy. We did just finish moving though (ugh, what a pain!), so we’ve been extra busy on top of all our normal appointments.  No, I have no idea what I was thinking either! Nevertheless, time continues to pass and lo and behold Braxton has made it to 15 months old! Yayy kiddo. 🙂

15 Months

Silly faces at the doctor’s office for his 15 month checkup.

 

Oh gosh, so where do I begin? Ah, yes, his hands….well Braxton is indeed pretty happy about having his hands free.  They’ve just about healed up very nicely.  The stitches are still slightly visible, but will continue to dissolve on their own.  You can barely see the scar along his fingers, and as he grows I doubt you’ll be able to see it at all. The graft is definitely still the most visible, but it’s healing nicely as well. I’m very pleased with the surgeon’s work. Braxton is doing so well though using his hands without any issues.  Weight bearing is awesome! He continues to work very hard on crawling.  Braxton has actually gotten pretty good at crawling backwards [that IS the first step!] and even pivoting around while moving back.  He can pretty much get where he wants to go and can even get himself back into a sitting position [takes a little work, but he can do it!]. This past week he even crawled a few “steps” FORWARD! Ahhhh, he’s so close! I know as soon as he can go forward, there’s no stopping him. I’m certain of it.

Hmm..oh the eye doctor! We did follow up with our ophthalmologist about Braxton crossing his eyes.  Of course, he did not do it in office, but this does somewhat reassure the doc that it isn’t something that needs immediate attention or glasses.  She said that unless we start noticing one eye crossing more than the other or the eyes “shaking” or moving outward that Brax would probably grow out of it and he’s just trying to focus on something. If he does start doing one of those we’ll discuss patching or possibly glasses.

And most recently, we checked in with his regular pediatrician for his 15-month check-up.  Lil man is now 23 pounds and 5 ounces and 30.5 inches tall!! He’s actually not all that little anymore! That’s a big boy! Poor baby had to get 3 shots, but took ’em like a champ and then passed out haha We will be going to get a hip x-ray soon and are being referred to an orthopedic doctor just to get a baseline hip & spine measure and rule out anything like hip dysplasia which would hinder Braxton’s walking abilities and other movement.  No one is overly concerned about that at this point, but it’s better to get it checked now than waiting until it’s too late.

Overall, we’ve had a pretty good couple of weeks.  The move went well [loving the new house!], Braxton is feeling better, he’s doing better, he’s babbling more and making more sounds, he’s moving more….it seems as though the sickness is finally all out of him. Now, we just need to get him back to eating! As always, thank you for reading!

 

[I promise not to make you wait 2 weeks for another blog entry again either!]

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He qualifies the called

God doesn’t call the qualified, He qualifies the called.

I saw this quote the other day and I immediately thought about Braxton and the journey we are on. I thought about all the people who ask us “ How do you do it?” or “I couldn’t even imagine being in your shoes” or “you guys are so strong.” Truthfully, we were not at all prepared for any of this. I never in a million years thought I’d have a child with special needs and I’d be lying if I said I didn’t sometimes think “Why me?” In tough situations I’m often reminded that God will only give us what He knows we can handle, and even still in those situations I think “Well I wish He didn’t trust me so much” this is so much more than I’m ready for. But every time, He shows me the way or puts people in my life to help me face the challenge, and I always come out on top. Every time I am called to do His work, He qualifies me.

Having Braxton in my life is no different. At first, I was completely overwhelmed. I remember being discharged from NICU and the nurse handing me a packet with names of the doctors I was supposed to call and schedule follow-ups with and an additional list of follow-ups that had already been scheduled for me. I just thought “Oh my goodness, how am I going to do this? How am I going to get this child everything he needs? How am I ever going to learn how to use this G-tube?” But, I got home, sat down and started making calls. Started scheduling everything and became more organized than ever. I learned to use the G-Tube, I’ve taught people how to use the G-Tube, I’ve faced everything that we’ve had to face for Braxton, but I didn’t do it alone. I have had my partner with me every step of the way, and we’ve had God on our side the entire time. Joseph and I aren’t ultra religious, but we both grew up with a strong Church presence and were involved in Church throughout our childhood. Now, as adults, we don’t go to Church nearly as often as we should, but we also haven’t just forgotten our own religious principles and ideals. When faced with tough situations I still get down and pray and turn my problems to God so He can help me through them, and every time, He does. I believe with my whole heart that God has been with us through every step of this journey. We weren’t ready for this, but who is? Nobody expects to have a child with special needs. But once it happened, I stopped and prayed. Prayed for Braxton to be ok, prayed for my own strength, but mostly prayed for God to show me what He wanted to me do. And He most certainly did.

I really feel like God has time and time again put people in our life to help us with Braxton. Whether it be to help heal him or to give us the tools or training we need to be the parents Braxton needs. I definitely don’t think I’m the mom of the year or any better than any other mom out there. But I do know I’m doing my very best to take care of my son to the best of my abilities. Do I always get it right? No, of course I don’t. Does any parent get everything right all the time? Absolutely not. But once God has called you to do something extraordinary, He gives you all the qualifications you need to succeed. We have some really great doctors who are truly on our side and have Braxton’s best interests at heart. I’ve never met people who are so willing to help. Everyone from the nurses, the doctors, the daycare provider, the therapists, all of them. The doctors didn’t have to tell me about additional social services available to help kids like Braxton, but they did. They don’t have to call me after hours to see how Braxton is doing, but they do. Our therapists are great too. Our speech therapist stays in close contact when Braxton isn’t feeling well and has a genuine interest in him getting better. She also just learned of several community programs available and called to put Braxton’s name on the waiting list for us. Our Physical Therapist is like a special needs guru and has taught us so much in dealing with the situation, and even given us tips on dealing with insurance and getting them to pay for additional services that Braxton needs. All of this is by grace of God. I’m certain of it. The next time you find yourself overwhelmed by a tough situation and feel like it is greater than you, stop and thank God for using you to do His work. Accept the challenge and trust that He will provide you with the people and tools you need to succeed. It won’t be easy, but nothing that tests your strength ever is. At the end of it all you will find that you are stronger than you ever thought you were.

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Annnnnndd they’re off!!

Followed up with the hand surgeon today, and Braxton got his bandages off!!! Yayyyyy!! He was definitely happy to have his hands back.  He kinda sat in the office for a minute not knowing what to do. He held his hands up like he expected his freedom to be short lived and have bandages back on his hands.  But doc came in and took a look and said everything is healing well and it was ok to keep the bandages off.  He did say we should maybe put a sock on his hand if he’s going to be crawling around too much. Brax is good to resume all therapies without restrictions too, so I’m happy we can get back to work on getting him mobile!

As soon as we got home we let Braxton lay on the floor and he immediately flipped himself on to his tummy and popped right up on his hands up on all fours. 🙂 He’s still very determined to start crawling soon.  We let him play on all fours until he wore himself out. He’s so happy to have his hands free again. He doesn’t seem to be in too much pain….for now! He should be completely healed up in another week or so.  Exciting!!

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Gastric Emptying Scan

Friday, we went for a Gastric Emptying Scan at Dell Children’s Hospital Imaging Center. What the heck is that, right? My thoughts exactly, well now I know! We arrived at 8 to register and fill out paperwork. Braxton had to stop all fluids by midnight the night before so his tummy would be completely empty for the test.

At about 8:30 they took us back to the Nuclear Medicine room to prepare.  Braxton was strapped down to a small board with some velcro straps. Wasn’t as bad as it sounds.  The test was to take about an hour and a half so they had to make sure he would stay still.  They used Braxton’s regular formula (Pediasure peptide) and added a special radioactive contrast.  Braxton was given 3 ounces of formula mixed with the contrast pretty quickly.  They moved the table to start the procedure. Above and below the table were x-ray tablets that would scan his tummy constantly throughout the hour and a half.  The purpose of the scan is to monitor the amount of fluid in Braxton’s stomach over the course of an hour. The x-ray every minute helped the radiologist to see if his stomach had emptied out the fluid that was put in.  The images were then to be sent to his Dr so he could determine if Braxton was having issues emptying his stomach properly. If so, that would explain the vomiting due to volume in his stomach.  If not, well, I’m really not sure what happens if not. I’ll have to call and talk to the nurse or doctor next week once he’s had a chance to review the results of the test.

After about an hour of scanning they radiologist determined it was ok to stop the test since it appeared that he’d emptied over 50% of the volume they put in. She then took a few extra pictures of his chest to see if any of the fluid had entered the esophagus which would prove whether or not he has reflux. Brax slept for about the first 30 minutes of the test, but once he was awake we talked and played with him and just tried to keep him still for the remainder of the test. He was such a champ through it all. He started to fuss a little the last few minutes of the test, but overall he was great throughout the test.

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Follow-Up Visits

Busy, busy week around here! Wednesday we went for a follow-up for Braxton’s hands.  Doctor said everything is healing very well! They changed the bandages and put him in dry bandages for us to change daily.  Yikes! Bandages are much less invasive so Braxton is a bit happier to not have them so thick.  Last visit, Braxton screamed and cried the entire time. This time I remembered to give him some pain medicine and he was in his normal happy mood! Yayyy mom! Monday we follow-up again and hopefully the bandages come off completely.

We also followed-up with the audiologist for Brax’s hearing aids on Thursday. Well, dad did. Dad thought the appointment was at 12 instead of 1 so when I left work to meet them he was already calling to tell me they were finished! Dad said the audiologist changed the tubing on one of the aids because it was falling out and other than that she said just to call as he grows and the ear molds need to be changed. We finally put them back in for him once ear drainage from the infection stopped, and he’s been doing well with them.

As usual here are some pics 🙂 OH, and a video! Braxton was in a silly mood and just laughing like crazy with daddy.

 

For more info on the hearing aids, please see this post.

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