A lot buzzing through my head

So much going on and yet nothing happening.

My brain is working on overtime with all of the new information that is slowly coming out about Braeden. Neurology states his brain looks good (huge relief!) But, then you ask why does he have so many issues. He stumbles around with the description of a Global Delay which really doesn’t mean much in the real world.

He had his IEP and his qualifying factor of speech delay is slowly improving which is great but, it’s the reason he is receiving other services which he really needs. So, if that goes bye bye… so does everything else. Right now, he’s scheduled for a follow-up IEP in June and he will most likely lose services at that time due to a loss in a qualifying factor. We are scrambling trying to prove he has a need for the extra services right now.
Sorry if this is all over the place, this whole process seems to be too so, it’s no wonder I can’t focus a single thought.

For right now, we are awaiting Neurology to order his genetic testing (which takes 3 months to process.) We are awaiting an appointment to have his legs fitted for Ankle Foot Orthotics (AFO’s) to correct his legs from the orthopedic, we are awaiting a call from the surgeon and his GI to discuss the muscle issues happening with his esophagus. The only thing we can derive from all of this is that it all seems to be muscular related. Though we know it’s not a neuromuscular disorder.

I’ve been researching and researching and from the best I can tell, we are dealing with myotonia congenita a congenital muscular disorder/disease. I am not a doc, so we don’t know for sure but it’s certainly what I am trying to find more about… there are two conditions known with this called Beckers Disease and Thomsons disease which both seem to have a lot of the symptoms Braeden presents. Though, it’s likely we won’t know until the summer what the tests show and what this really is. It definitely feels all muscular related. So for now, we treat the individual areas, continue to go through necessary testing, and hope for some answers before Braeden loses his services in June or starts Transitional Kindergarten in the fall.

Another Curve Ball

It’s been a while since I’ve been on here but that seems to be the case with me. This blog is my therapy and I seem to post when stuff is happening. Here’s to my free therapy because life has thrown us yet another curve ball.

Looking back, my last post was the day Braeden had his G-tube removed… 12/12/12. A great day and I’m happy to report all is still good in the land of eating. Other stuff, not so much.

We have always known something just wasn’t quite right with our little man, but it’s always and I mean ALWAYS been deemed a “Global” delay. No one has ever added up all the variables to equate it out to a diagnosis of something. Very frustrating. When your child has “Something” you can look at here’s the problem… here are some solutions or things that work for that particular issue. With a Global delay, you handle stuff as it comes up. The latest issue to “come up” was B’s toe walking.

B had an IEP (Individualized Education Plan) meeting right at the end of the year where he was approved for Physical therapy offered through the school (for anything school related.) During this meeting it was strongly suggested that B see an Orthopedic doc and a Neurologist due to the toe walking and other issues like his high and low muscle tone (not new stuff here.)

We met with the Ortho doc yesterday and after taking a few x-rays it was determined that B doesn’t have any skeletal issues. Which is great but it also means it’s something else. In talking with the doc about other things going on… drooling, scar tissue, language delays, swallowing issues… All is pointing toward Cerebral Palsy. This is not an official diagnosis, as B still needs to meet with the Neurologist and go through testing there but, it is strongly suggesting this may be what B is dealing with.

As most of you know, B at birth was fine and things went bad and he ended up needing procedures early on. His first procedure he wasn’t even 6 weeks old and crashed five minutes in and needed to be intubated. He was very difficult to intubate and we are still not 100% sure how long he was without oxogen. I believe this may be what caused his possible diagnosis.

Right now, I am upset, scare, nervous, and exhausted. I want his Neuro appointment now but have to wait until the 29th. It’s torture not being able to talk with them and see what their perspective is and of course get testing. In the meantime, he will begin Physical therapy again outside of school and is being referred to get leg braces to help him walk flat.

The upside of this is we may actually start having some understanding of a lot of how our son is. The Ortho doc stated that the fact he is walking is a good sign, most with CP either don’t walk or need a lot of assistance in walking. So if this is in fact CP, he is high functioning.

So, for now we wait and hope.

Ding Dong The Tube Is GONE!!!!

As I’m sure some of you have figured out, today’s tube removal was NOT planned.

Braeden had an incident about a month ago where the tube pulled out and since then has been having leakage and has been complaining from time to time about pain. Not enough that didn’t seem normal so we changed tubes, did all the things we would normally do.

Yesterday he had lots of leakage so I put in a call to the GI and she had us pop in this evening to check it out. It came down to two things. A.) His site was tightening again, causing some pain and possibly B.) His tube was not long enough for the “track” (the channel to his tummy) and the tube was being inflated mid track instead of at the base.

Either way, meant some further intervention that I was uncomfortable with considering we are talking about taking this damn thing out in 1-2 months.

So, the doc says to me, “If it were me, I would just go home and say it fell out…” Mind you, he has a good portion of scar tissue around his site… this thing is not JUST coming out. I said to her, ” are you telling me it’s ok to take out?” After a little more discussion, she finally said, “lets just take it out!” So, one last restraining and pop! it’s gone!!!!!

Mr. B is not entirely happy about this but who would be… He just lost part of his little body today. Something that has been as part of him as anyone’s belly button, fingers, or any other part. He is shedding lots of tears and asking for button right now. He will heal and move on, his button will heal and we will move on, and one day my emotions will settle and I will have this as just another memory. 12/12/12 is said to be a lucky day… I would have to agree.

Feeding Therapy for the little man and plain ol’ therapy for mom

So, the question I get asked a lot lately is, “What goes into feeding therapy?” or “How do you get him (my son) to eat?”
The answer? Unfortunately, this one is not so simple. So, if you really want to know, let me enlighten you.

What a good day looks like…
7:00 am, 11:00 am, 2:00 pm, and 6:00 pm, Braeden sits and drinks 3 ounces of formula while watching a favorite video while I prepare his solids. His solids consist of 2 ounces of a puree’d meal (spaghetti, soup, chinese food, indian food, you name it!) and 2 ounces of a fruit/fruit, veggie combo. By the time I return with his meal, he has consumed his milk and is ready to consume his solids with no “refusals” and is able to be offered water/juice with the rest of his meal so as to fulfill his “liquid requirements” for the day….

Yep, this is a perfect day… and, for the most part our last 3 weeks have gone like this. We have had minor refusals, until about 5 days ago. That’s when he started throwing his cup and hitting and we quickly became aware of what a bad day can look like…

7:00 am, Braeden sits and drinks a little bit of his milk while you prepare his meal while watching a favorite video, we sit down with his food and get a few bites in before needing to require him to drink… he refuses, we count to 3 and state take a sip or no more video… he contemplates… 1… 2…3… Video off. Take a drink and you can have video… He drinks. Video resumes, feeding resumes… 10 minutes later, take a drink or bye bye video… 1… 2… 3… video off, this time he goes as far as smacking the cup out of my hand. Pick up all of his food, cup, etc. and leave the room, come back 5 minutes later and he drinks. This pattern goes on for 1 whole hour! …and we get to feed him 3 more times in the day.

Needless to say this is frustrating and exhausting. I know we are dealing with behaviors that have to change in order for him to understand that eating is something that MUST be done all of the time. But, very time consuming and draining. Based on our Feeding Therapist, we are really lucky that this is the first we are seeing of some of these behaviors since he has been in the program for 3 going on 4 months now and most lose WAY before this.

For those out there that are thinking, why not just not feed him… he’ll eventually get hungry and eat. Here’s a fact… He won’t! He’ll starve himself. He like many kids who have been tube fed from early on (some since birth) have no concept of “how” to eat, they have no concept that by eating something by mouth, their tummies will feel full. They make no correlation between eating and feeling good. Additionally, most can’t handle how something feels going down their throat (smooth, liquid, or not) and their instant reaction is to vomit… and in my son’s case (and many) he has had a surgery to prevent him from vomiting.

I know the behaviors are temporary and we will get through this next hurdle but please know if I’m late anywhere, don’t want to go out, or I am in a pissy mood.. it’s not you, I’ve just had a rough day getting my child to do what everyone else does with not much thought… EAT!

It’s Really Happening

After months of fighting to get approval for Braeden’s Intensive Feeding Program, we received approval.  Then we went on a waitlist and were finally given an initial assessment in December 2011.  Then we were finally given a start date of March 12, 2012 about a month ago.  Everything has been hurry up and wait, so I’ve had to kind of store all my feelings about what this really means.  That is until today, when I received the confirmation email that the docs will be arriving at our home 7:30 am Monday.

That’s when it hit me like a ton of bricks… It’s really happening!  My stomach is wound into a million knots of excitement and nerves.  I feel like I’m placing a huge bet on the prized horse… If everything goes well, the pay off is going to be HUGE!  And I can’t even go to the place if things don’t go well (though it does sit at the back of my mind.)

What does this all entail? Starting Monday (Yes, I did just say MONDAY! Just 5 short days away!!!!) Braeden will have an In home intensive feeding program start.  The docs will come in and spend 10 hours a day for 5 full days at our home working with him to begin the process of tube weaning.  After the 5 days, they will do follow up visits on either a monthly basis (or more if necessary.)  The ultimate goal will be to get Braeden to consume ALL of his calories by mouth via liquids and puree’s.  Once he has established that, they will introduce texture.

It’s super exciting, yet somehow I ended up in a puddle of tears tonight.  All I can think is that so much of his life (our lives) has been consumed by this tube.  It’s a lot to process that this chapter will finally be on the road to closure.  It certainly won’t happen overnight, or even a week… Not even a month or two.  But, it’s finally happening.

Reality sucks

Having a child that doesn’t have enough communication skills and has a feeding tube sucks.  I wish he could tell me when something isn’t right or something hurts… He does but not in a way where I fully understand how to make it 100% right.  It feels like we jump through hoops and have to have doctors question us constantly to convince them that there is something wrong.  Ultimately, it all works out and we get it resolved but the process getting there leaves little to be desired.

So what is a parent with no understanding of what it’s like to have a tube to do? Read Blogs… Lots and lots of Blogs.  If you don’t know of anyone with a feeding tube… do know this, there are a TON of conditions that require people to resort to a feeding tube.  So, reading these blogs I get to “know” the individuals writing them and all their afflictions which are heartbreaking.  But, their words give my son the voice he doesn’t have.  They, all those people whose blogs I read, help me understand what having a tube is REALLY like.

This is a quote from a blog called Entropy and Light….  “The tube site itself is at its basic level a stab wound kept permanently open by a length of hollow silicon, that I must not allow to heal.  So to heal the emotional hurts of having it placed and all that went with it required me to be very clear.  I had to heal those memories, because almost everything I do in life; the way I dress, move, bathe…..let alone the facts of feeding relate to my tube.  I can never forget it, even for a minute.  My physical abnormality is constantly there.”

Ugh… but, pretty much sums up what I fear I have suspected all along.  With this I “pray” that insurance will get their heads out of their butts and approve my sons Intensive Feeding program and we can get rid of this damn tube…. So that my son can live a “normal” life or at least as normal as our family gets.

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