A new year

It's a new year so hopefully it will bring with it hope, progress and success. One of my resolutions is to update more often but so far that has been an epic fail. It has been a busy couple months. Korbin is no longer in orthopedic shoes but now in SMO's which are little custom made braces that go to his ankle and fit great under shoes (the shoes that were made for AFO's). He has been doing so much better with the SMO's than he did with he shoes. Makes life oh so much easier when he doesn't mind wearing them!

Our next venture will be a TheraTog suit. It is an undergarment that is made out of neoprene (think wetsuit). From what I understood, we are hoping this will help with his trunk control and stability as well as preventing "W" sitting and hyperextending his back and neck. I am hoping that we will be ordering the suit soon.

We did get a huge Christmas present from Korbin. He was given a walking toy for Christmas by his uncle. Shortly after assembling the toy, Korbin stood up behind it and started walking!!!! It was truly amazing. It's still not a pretty walk but it's a step in the right direction for sure. Also, his language skills have pretty much exploded over the last month or so. His vocabulary has increased exponentially and it seems that his receptive skills have improved quite a bit. We also just had a follow up eye appt. and his eyes are still looking good.

All in all, things have been going very well. He has been pretty much healthy and really making progress. I am however going to seek a second opinion if we are accepted to Shriner's hospital.I can't help but wonder if Korbin is getting all the care he needs. I am constantly reading about kids with CP getting this therapy and that treatment and using such and such equipment. When we go to therapy it's the same song and dance. Stretch, Stretch, Stretch. I get that stretching is a requirement and I do understand that they want him safe before he starts walking. *With Korbin hyperextending his neck and back, it causes him to fall backwards at times. Pair that with the lack of stability and inability to stand unassisted, it makes for some knots on the head* I really do get all that but I guess I would assume that they would work with him and maybe practice some. I guess my confidence in my "team" has began to falter and frankly, that is not a good thing. If you don't have confidence in a team that is helping you, it makes things difficult but if you don't have confidence in the team that is helping your child, well, that's even worse.

I know that Shriner's will not have the magic wand that I am always in pursuit of but I would really like to see what they have to say and what they recommend. Unfortunately it's a little over 10 hours round trip. I have questioned my intentions about applying trying to make sure that deep down I'm not going hoping for a quick fix (I think I will always secretly want that). I guess the worse thing that can happen is they tell me that our "team" is doing all the right things and that's what they would do. Then I would know that he is getting what he needs. I can't seem to shake this feeling that we're missing something. I don't know what that would be nor do I have a clue as to where I would start looking but I just think that we are missing a key piece of the puzzle. Maybe if we found that piece we could make everything better or at least easier. And of course, it could just be the part of my mind that wants everything all better and normal creating wishful thinking. Nonetheless, I really do feel that we are missing something. Maybe Shriner's will find the "missing thing" or at least put my mind at ease that no, we aren't missing anything and are doing all the right things.

17 months old

Korbin is getting so big! He is really doing great these days. About a month ago we saw a Physiatrist. A physiatrist specializes in rehabilitation and pain management/control. This particular physiatrist deals with pediatric CP. He is also a general pediatrician. We really couldn't have asked for anything more. Our first visit was very productive. He was very thorough and friendly. He decided that we would try Korbin on a muscle relaxer called Baclofen. We worked our way up to a full dose over the period of 3 weeks. He also felt that it was time for Korbin to start speech since his language skills were lacking.

After Korbin started taking a full dose of Baclofen, we saw some major improvements. He started talking more and even got to the point where he is almost sitting independently. His fine motor skills have also taken a leap. I think the Baclofen played a huge part in his progress. We are currently working on doubling his dose of Baclofen to see if that can further his progress.

About 2 months ago, shortly after the Physiatrist visit, Korbin came down with a cold or some kind of bug that caused him to run a fever. A couple days into it, we had a bit of a scare. He had a seizure. Of course, I had let my guard down for seizures and didn't realize that was what it was until someone pointed out that the symptoms matched pretty closely. We saw the neurologist a few days later. She confirmed what we had suspected: that it was indeed a seizure. Because of the seizure lasted approximately 20 minutes, the neurologist gave us an emergency medicine to give him in case he has another. The neurologist seems certain that we haven't seen the last of the seizure activity. If/when he has another, he will be on anti seizure medicine.

Since my last post, we have had another eye surgery which went very well. We discovered a cyst right above his eye shortly before surgery so the eye Dr. removed that during the eye surgery. We have also had another MRI. That went as well as we could possibly imagine. The hydrocephalus has pretty much resolved itself and the Dandy-Walker has been downgraded to an innocent cyst. We have one more surgery in our near future and that will be on his right foot. Hopefully that will take care of that issue.

He is in therapy 3 days a week (speech twice, OT and PT once a week back to back). It is all pretty overwhelming sometimes. It has become very difficult to see kids that are younger than him progress and eventually pass him up in development. I find myself getting more upset about it now than I have in the past. I get disappointed every week at therapy when I see how he is no closer to walking than he was a month or two ago. I am hoping with all hope and keeping my fingers crossed that he walks at least by the time he is 2. They have tried to get him to walk in a walker but his legs are just too tight to get any kind of gait. Not to mention the fact that he still hasn't mastered sitting properly so he lacks stability.

I know they warned me that it was going to be a long road for us but I guess I never really imagined how long it would be. I just figured that they were wrong. Surely nothing could be wrong with my child! I guess like everyone else, I never figured something like this could happen to me or my family.....much less my child. I assumed they had to tell me all of those scary things because that was their job. When we noticed that there were delays and even when he received the official diagnosis, I guess I was under the impression that he would be one of the "mild" cases where no one could ever notice. Never once, until recently did I actually believe that my child would require a walker to walk. A WALKER!!! Even now, it just doesn't seem real sometimes. Part of me is ready for that mainly because I want him walking. The other part of me isn't ready. That will mean it really is real. It will be obvious that there is something "wrong". Right now, he just looks like a baby so no one really thinks much of the fact that he isn't walking. Even sitting, I don't have to make a big deal about him not sitting anymore since he has figured out how not to tip over and hurt himself. I am not sure that I am ready for the "looks" and the questions. I don't mind talking about it but I know that the questions will exponentially multiply. Even after his foot surgery, if they do indeed cast his leg, I am sure we will be answering many questions.

I am still waiting to see that glimmer of light that is supposed to be at the end of the tunnel but I fear that we have barely covered any ground in our tunnel and that the end is nowhere near.

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." - Mother Theresa

14 months old

It's been a little while again. I really have to get better at this. Korbin is doing great. He is almost 19 lbs and is growing by the day. We have had a lot of progress since I last updated. Korbin had his eye surgery shortly after his birthday. He made it through the surgery like a champ. We are assuming that he is seeing much better since shortly after the surgery he began getting into things he had never messed with before. Our only thought is that he didn't see these things before. The surgery worked very well although there is still some crossing. The Dr. now wants to see if glasses can correct the remaining crossing before jumping into another surgery. We will go for our 6 week post op tomorrow and will probably be getting the rx for the glasses. He is going to be absolutely adorable!

Over the last few weeks we have also conquered the eating issues that have been plaguing us for months now. He had some serious gag reflex issues that just resolved over night. He is now eating everything in sight! I will post a picture to illustrate this. He is also completely off a bottle and has been for a couple weeks now. I really thought that he would be more difficult to wean but he was probably easier than the other two!

As for motor skills, he is doing well. He is still lagging in the fine motor department but is slowly improving. He still can't sit on his own the correct way but he has mastered the are of "W" sitting. That technically doesn't count as sitting so that works in our favor with the insurance company. He is pulling to stand and really trying to cruise. His foot has started turning worse since he is standing but he is now wearing corrective shoes to try and fix this. He has only had them for a few days so we're not sure how they will work out. He doesn't really care for them so that makes it harder but we are all adjusting.

His personality is really developing. He has a temper and is learning the fine art of fit throwing but most of the time he is so happy. He is a ham for the camera and always has a smile. He has started to become more independant and isn't near as cooporative with the therapists as he used to be but they are great with him.

We have a few major things coming up this summer but it seems like aside from therapy, things are really slowing down some. Thank goodness. He will have his circumsicion surgery in a month or so. I am not sure if they will be correcting the hypospadias or not. I wasn't really sure what the Dr. had decided when we saw him so we will see. We will also see the neurosurgeon again sometime in July to have another MRI done. If I heard correctly and remember correctly, this MRI will determine if he will need anymore anytime soon so fingers crossed and prayers for a good report for that!

Schools out for Mikey and we are leaving for vacation in 2 days so we are thrilled about that! I know I say this everytime but I will try to update more often.

Sabrina

Happy Birthday Korbin!

I am a little late with the birthday wish but Korbin turned 1 on April 17. He is doing great! He is finally back up to his pre-flu weight and is 18 lbs. It has been a very long year that has gone by quickly if that makes any sense at all.

The last week has been an emotional one for me. With his birthday coming and going, I couldn't help but to constantly think about the events of his birth. Of course many tears were shed. Also, we saw the neurologist for the first time in over 6 months. As expected, she made it official that Korbin has Cerebral Palsy. That was very hard. Even though we knew it was coming and I had been preparing for it for months, it didn't really take the sting out of it. I know that this doesn't change who he is and he is the same happy boy that he was before she made the announcement but it is still hard. Basically this just means we will continue to do his therapy and just keep an eye on his development.

As for his development, he is doing okay. He is officially delayed now but is so determined to be mobile. He is able to get anywhere he needs to and has learned how to pull himself up to standing. The neurologist was shocked by this since he still can not sit unassisted. Of course the way he gets to his feet isn't the right way or even the easiest way but he does it. He only uses his arms so he is developing some serious upper body strength. He should be using his legs and "stepping" into a standing position but this seems to work for him. Unfortunately he hyperextends his legs when he stands (it looks like he locks his knees) but again, we will just deal with that.

So, over the next short period of time we are yet again going to be busy. We are waiting for the appt. to be set for Korbin to see an orthopedic Dr. to get x-rays and to figure out what kind of braces to put on his feet. We were hoping to wait on the braces but his right foot has started to get worse instead of better and now his left foot is starting to turn and have issues too. Also, he will have his eye surgery this week on April 23. I am dreading the actual surgery and recovery but I am hoping that maybe this will help his balance a little bit but I am trying not to get my hopes up.

I will update again after surgery and share how everything goes.

Sabrina

Preparing for a busy month

Things are going well here now. We had a rough bought with the flu for a week or so where all 3 kids were sick. It seemed like they would never get better but they are all finally feeling much better. Korbin is finally getting his energy back and going back to the happy boy that we all know and love. It was so hard not seeing him even crack a smile for days on end. He always has a smile on his face so we knew he was sick. The flu hit him harder than the rest and it took it's toll. He has lost 2 lbs and is now back down to 16 lbs. Months to gain and a week to lose.

All in all he is doing great. He is still not sitting on his own but seems to have finally gotten past the plateau we have been stuck on for months. He is so close to sitting but just still doesn't quite have it. We are really working on it. It is getting harder and harder watching babies in his age group learning more and more skills while he seems to have just gotten stuck. He wants to do so much but just can't physically figure it out. I know you aren't supposed to compare and all babies develop at their own pace but it is almost a slap in the face sometimes.

Korbin no longer has to wear the splints on his hands. His hands are open almost all of the time now which is wonderful. Now that he has made this progress, his fine motor skills with his hands has really improved. We are still pretty sure that he is going to need a brace on his foot. The muscle tone in his right foot has not let up any over the past months. We will approach that when he is pulling up and weight bearing. I have no idea when to even expect any of that to happen though since we are still working on the sitting.

We go next week to the eye Dr. to schedule his eye surgery unless by some chance things have corrected themselves although I don't think we are going to be able to slide out of this surgery like we did the last. I will say however that I would much rather eye surgery over brain surgery any day although any surgery stinks. We also see the neurologist in a few weeks. Not sure how I feel about that at this point. I am really nervous though.

We are still battling to be able to have Korbin see a physical therapist on a regular basis. Turns out that since he hasn't really missed any major motor milestones the insurance doesn't feel that he needs it. Hopefully we will be able to resolve this soon since he is quickly approaching the point where he should be pulling up, cruising and essentially walking.

I will post again when we find out when his eye surgery is.

Thanks for all of the continued prayers.

Sabrina

Just a quick update

Nothing much new to report which is a very good thing. Korbin is quickly approaching 1 year old. He is 10.5 months old, 8 months adjusted. Hard to believe. He is getting so big so fast. He is now right at 17 lbs. He is such a happy and content baby. He loves to smile and just loves anyone talking to him. He is very motivated to try new things which has worked in his favor when it has come to reaching milestones.

Our biggest problem right now is the insurance company being stingy with his physical therapy. Unfortunately, the fact that he hasn't really missed any milestones has caused the insurance company to cut back his therapy while the therapist feels that he needed it increased. They only consider the numbers and didn't take anything else into account. He has developed a bad habit of hyperextending his back both while playing on the floor and being held. When he is on the floor doing this he looks like he is doing a back bend. At times it looks like he is about to do a back flip. He will place the very top of his head near his forehead on the floor and push his bottom and back up to the point that a ball could easily roll under him. This obviously isn't any normal kind of posture. He will arch back when he is being held too and does not like it at all when he is prevented from doing so.

He is still not sitting on his own and I am beginning to become impatient for him to master this skill. The most frustrating part is that he has just plateaued on the skill. He has been "almost there" for 2 months now. I am sure that the skill will come in time but as he is becoming too big for his infant carrier (he has about 5 lbs left) I am beginning to fret over what I am going to do when he is no longer in the carrier. Right now, when we go to the store, I just put his carrier in the back of the cart (not too keen on putting a carrier on the top) and he just hangs out. He can't sit well even propped in the front of the cart and with him arching the way he does he hits his back and starts screaming. Same goes for if we go out to eat. He can't really do those high chairs either so we just carry in his carrier. I think a lot of my stress comes from the fact that the reality is setting in. We may be having to make modifications to a number of things. Typically, when a child outgrows the infant carrier they can sit up so there usually isn't a problem. That has been my experience anyway.

We still don't have an official diagnosis yet and the therapists still dance around the subject but to me it feels like the elephant in the room that no one wants to talk about but we all know is there. Our pediatrician has been the only one that hasn't beat around the bush. He did at first but not so much anymore but I don't think that he makes things official anyway so I don't guess it really matters.

Thanks again everyone for keeping up with our little warrior. Please continue to pray for his continued success and for my patients as we begin to battle the beurocracy that is insurance.

Sabrina

Another piece of good news

I am a little late posting on this but there is good news. We had our neurosurgeon visit last week along with Korbin's 9 month check up. After a very long day in New Orleans filled with timing issues and the problems that often accompany dealing with multiple departments, Korbin had a CT done and we finally got to sit down with the NS. We were told that there is still no need for a shunt (YAY!!!) and that we would not have to return for 6 whole months! That gave me the impression that he is confident that Korbin is doing well. We will have another MRI done in 6 months and that will likely be the last one for a very long time depending on the results. We did confirm that Korbin indeed has Dandy-Walker Varient but a very mild case which could go without notice. DWV is the best case scenario of the DW diagnosises. That was very good news!

The next day we had his 9 month check up and everything looked great. His iron was fine and everything else looked good. He did have an ear infection that we were unaware of but some antibiotics will fix that right up. He weighed 16lbs 14.5 oz and was 26 inches long. He is finally on the charts for his actual age. The Dr. and I did have a conversation about cerebral palsy. Korbin is now at an age where we can really see how he is developing. He has hit all of his milestones although some have been a bit late even for his adjusted age but he has hit them none the less. He is still not sitting unassissted and is on the verge of being late for that which will likely in turn make him late accomplishing other major feats such as pulling up and eventually walking. All of the Dr.s and therapist assure me that they have no doubt that he will walk (which has been one of my major fears all along) even if it is a little late. He may also require a little assisstance such as a brace or something since he has some muscle issues in his feet and toes. Although it will likely be the neurologist that officially hands us the diagnosis on a silver platter, the pediatrician has all but assured me that he does have cerebral palsy. I have had to really push for someone to give me the information straight instead of dancing around the reality. I know that they have been trying to give him the benefit of the doubt but I am really ready to just finally have it said so I can proceed to deal with it mentally. I want nothing more than for him to be completely healthy and unaffected but I know that something is not completely right and it is a really tough mental game with everyone beating around the bush. I guess until it is official official I will always harbor a little bit of hope in the back of my mind that maybe, just maybe everything will be perfectly fine.

I know that it shouldn't make a difference one way or the other since it really won't change anything but it really just comes to a point that you want to go ahead and hear it so you can go through the grieving process. He is doing really well so that plays a huge part in my not being too terribly devistated at this point. He is a very happy and easy going baby with a spitfire temper. He is "crawling" everywhere and is doing well with his eye patches and his splints on his hands. Hopefully we won't have to do the splints for too long though. He is truely a blessing.

Everything is really going well overall. We haven't had any major setbacks for quite awhile. He has come so far. I would like to take the opportunity to mention that I have decided to get involved with my local chapter of March of Dimes. I will be participating in the March for Babies in May. March of Dimes played a big part in Korbin's NICU success. Medical science has come so far and the only way for it to advance farther is research and that research must be funded. Also, March of Dimes provides support for families in the NICU by trying to make things just a little bit easier during what is a very difficult time for families. The March of Dimes ultimate goal is to see a time where EVERY baby is born healthy. If you would like to sponsor us in our March for Babies, please click on the button on this page and it will take you to my page where you can donate. If you are not able to donate money, please contact your local chapter to offer services. This has become very important to me. Honestly, I knew about MOD but never really gave it much thought until my little boy almost died and would have died if it weren't for the good lord above and the knowledge achieved through research that MOD supports.

Thanks again and I appreciate anything that you can do.

Sabrina