I think I can, I think I can…

I must admit, I have been feeling a little discouraged recently…now that G is 7 months, rounding up to a year, it seems to hit a little harder home how far he has to go to reach his milestones….when he was 6 months (which still rounded down!), it seemed there was all the time in the world for him to get there, and we were so hopeful he would catch up to his peers in no time. Well, here we are 7.5 months and G can’t sit by himself, roll over, babble…but he sure can smile and giggle, which is awesome. We thank God every day for his little personality which is starting to shine.

Daddy P and I started to wonder if his low muscle tone would go away or if he would be “floppy” all his life.I expressed my concerns to his physical therapist this week and she shared that there is a wide range of “normal” muscle tone, and you can see it just looking around – those folks who slouch have lower muscle tone, and those who sit super upright and stiff have high muscle tone. The important lesson is that while G has low muscle tone, it doesn’t mean he isn’t strong – strength and muscle tone don’t go hand in hand. She did some exercises with him to show his strength and prove to me his muscles do work in there, they just need to get stronger. He has come so far in these 7 months that she does feel confident he will get there. While she can’t say for sure that he will be able to sit or stand or walk, she does feel confident that he will someday.

G is interacting more with his big sis too which is awesome to watch – they played “row, row, row your boat” the other day and he was over the moon. He lights up the minute she is around, and wherever she is, he will kick and squirm trying to get to her – I know she is a huge incentive to him to get mobile, and she loves running around to keep him paying attention!

Lil G received the book “The Little Engine That Could” for Easter and I read it to him today…keeping in mind his attention span is usually a matter of seconds, he sat through that entire book giggling and kicking and wanting more.  He works so very hard every single day to overcome his physical deficits, and in his own little way, he was showing me how much he knows he can do it! He is a huge inspiration and an important lesson to not take one single movement for granted. I love that little guy and can’t wait to see what his next miracle will be.

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And, back where we started…kind of.

Little G did awesome today! We arrived at the hospital and despite not eating for almost 12 hours, he wasn’t furious…what a trooper.

2013-03-26 10.01.37Putting in his tubes took about 5 minutes – his ENT let us know he had quite a bit of fluid in both ears, so this should alleviate his ongoing ear infections. Hopefully!

The downside was his hearing test, or ABR (auditory brain stem response). His last ABR reflected hearing loss in his right ear, and perfect hearing in his left. 6 months later, and this one reflected hearing loss in his LEFT eat and perfect hearing in his RIGHT! WHAT?? Not what we were expecting – the hope was that the right would come back as fine, and we can attribute the prior issues to fluid and be done with it. Now, things are a bit more complicated because they had just drained his ears, and still there seems to be hearing loss.

We know there are no issues with his Nerve of Hearing which is a great thing, so that leaves us with issues with the bones in his middle ear or fluid. I am no doctor, but seems to me if there were problems with the bones, they wouldn’t have disappeared – bones don’t miraculously change! (as far as I know!)

Now they want us to do another ABR (which means sedating again). At this point, I am in no hurry – we feel like he can hear, and the audiologist confirmed again she does not have concerns about his speech and language development, which is the main concern for solving this at such a young age.

We will see the ENT in a few weeks and get his thoughts…again. Just wish it was a bit more simple than the ongoing inconclusive results!

ECI

Early Childhood Intervention –  ECI is a statewide program for  children, birth to three, with disabilities and developmental delays. While in the NICU, ECI came up fairly often, as well as First Steps, a high risk follow up clinic. It was all a bit confusing, but we wound up with private therapies with First Steps (occupational and physical). At our most recent visit to First Steps, at 6 months, they recommended getting G involved with ECI – they want to get his “case” established with them so we he transfers to the school system, which disabled kids often do at 3, he already has a case manager and the transition is easier.

This past week ECI came out to see our little guy… they agreed he should stay with his current therapies, and they will see him for speech therapy to help G with his eating. While he can get some food down, he gags at times and surely can’t eat like most kiddos his age.  His new therapist will start in a few weeks  and will come every other week – BUSY little G!

 

Do you hear what I hear?

As some of you may know, hospitals won’t release newborns until they have had a newborn hearing screen. The day we were being released they wheeled in the little cart to perform G’s test so we could go home.  Recalling the experience with baby #1, when it took more than 5 minutes we were worried something was wrong. An hour later, the technican confirmed G failed his hearing test in one ear, but couldn’t say much more as to why. At that point, when you have also just learned your son is missing a part of his brain and may not walk or talk, it was the least of our concerns and we just wanted to get home!

Once home, we were scheduled for an Auditory Brainstem Response (ABR) in which they expect a baby to fall asleep while they stick electrodes on their head and pull earphones in an out. Yeah, that was NOT a fun experience. AND you can’t move because any movement throws off the results.

G followed directions
G followed directions

SO, FOUR hours (I kid you not!) I sat in a hard wooden chair holding that baby hoping for good results. Four hours later and we were told one ear is good, the other is not so good, but not terrible – he can probably hear, just not at a “normal” volume. They directed us to go see an ENT and come back some other time.A few weeks later, visiting the ENT, and he wants us to do another ABR – as you might imagine this threw me into panic as I was still recovering from the 4 hour extravaganza at the hospital! Long story short, we attempt another ABR (which didn’t work – you can’t get a baby to fall asleep when they are being poked and prodded!), a multitude of other hearing tests over a course of weeks, and nobody can tell us anything.

At this point they want to sedate him for another ABR (poke and prod all you want with drugs!) – Daddy P and I were hesitant to sedate him as he was so teeny tiny, and of all his medical issues, just didn’t think this was the most important. If we were going to do it, let’s do it with his MRI so he only needs to be sedated once. BOY it is a PAIN to schedule multiple procedures and it was literally scheduled 3 months out.

Then the little bugger goes and gets 3 double ear infections in 4 weeks. This means tubes for those little ears. Now trying to schedule the ENT to physicially be there AND radiology, it was starting back at square one and would have been months out again.

With all this drama (and hours of phone calls), we have dropped the MRI and he will get his tubes and ABR next week. We are anxious for this ABR in hopes it proves he just had fluid in his ears during every other test. If that is NOT the case, they have narrowed it down to be an issue with his inner ear bones. They will want to do a CT scan (which we aren’t thrilled about) and probably get him hearing aides fairly soon.

Having said all of that, mama’s intuition says that boy can hear! He smiles at us, turns his head when he hears his sister, and startles at loud noises. Will let you know how things turn out next week!

Testing, Bananas, and Rolling, Oh my!

G had his 6 month check up and we found out he was above the 25th percentile in weight! No failure to thrive around here! We also saw the ENT and, no thanks to 3 ear infections in 4 weeks (!!), we confirmed he will need tubes – those will be put in on March 26, and he will also have another auditory brainstem response (ABR) performed at the same time to further investigate his supposed hearing loss.

Last week G had his 6 month evaluation at First Steps, the developmental specialists. Here was the breakdown, with a score of 8-12 being average:

  • Cognitive: Score: 7 / Percentile Rank: 16 / Description: Low Average
  • Language: Score: 12 / Percentile Rank: 6 / Description: Borderline
  • Motor: Score: 4 / Percentile Rank: 0.1 / Description: Extremely Low

So, we knew he was behind, but its always a bit discouraging to hear just how far behind with his motor skills. He is functioning more like a 2-3 month old right now. The good news is that he has cognitive response – so, his brain is functioning in a capacity which they feel he will be able to learn the motor skills.

G will continue his home therapy of PT and OT twice a week, and they are going to refer him to ECI for speech therapy. The speech therapy is to help him learn to eat – they are concerned that because he doesn’t have good neck control, he could choke fairly easily.  They want to get him as a “case” within ECI which is a government program, because that way he is in their system when it’s time to transition to school.

However, after speaking with this dietician and OT, we can start giving him foods on his NUK, a little textured tooth-brush looking thing, to get him used to texture. He got to have some bananas today, and loved it!!

AND, he rolled from his back to his front today!! What a miracle!! He had a big smile on his face too, he knew he did something good! We saw that he was trying so hard, and mom, dad, and Little C all got in the corner calling his name until he rolled over! It was a very special moment for us all!

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Just before the big roll!!