hypotonic babe

ive been reading more and more about hypotonia.  wikipedia says even in the first paragraph that diagnosing the cause of hypotonia is often unsuccessful.  it goes on to say that it can be helped with early intervention.  we have the ei coordinator coming by today to fill out paper work for hazel to be evaluated but she made sure to tell me on the phone that it has to be effecting education and at least a 30% delay to qualify.  this information i already know and all my spec ed background will help me make a case that it is linked to education in so many ways.  im so glad i dont have a job like this lady's anymore.  its not her fault, but spec ed has changed so much and its so hard to get your kids help.  with a diagnosis she acted like we may be able to get the services.  but in a previous post you read that we wont be doing that anytime soon.  silly you have to have a label and wait until there is a huge gap of delays to receive treatment.

sorry im getting side tracked.... back to info about hypotonia.  down the road we may see difficulties with gross motor things like riding a bike, climbing, falling down stairs easily, running, etc.  possibly difficulties with potty training, standing for long periods, sitting in a chair for long periods like for school and such, and handwriting is difficult for hypotonic kids because it take a lot of trunk support.  who would have known.  i already notice hazel leaning forward onto her hands a lot if shes been sitting and playing awhile.  it gives her little body a rest.  but hypotonic kids can have really bad posture b/c of this too.

also, when we were at the neuro appt the dr turned to the student who was in the room and explained to her that babies with low tone have big bellies like hazel does.  didnt know this either.  i have read a lot about their doughy skin and hazel has this.  but i guess i didnt realize all her rolls and baby fat that is still there is due to this too.  i guess it makes sense.  we all talk about 'toning up'.  well hazel's tone will always be low so although she can increase muscle strength, she may be a little soft :)  if any of you have seen teen mom there is that little twin girl on there with low tone and she has the rolls like my haze.

most research says that hypotonia can be considered a type of muscular dystrophy or cerebral palsy.  a lot of the tests they were going to do on hazel could have told us this, but if they came back negative i think you can still classify it into either of these categories based on symptoms.  they dont think the problem is in hazels brain, but in her muscles.  to us it doesnt really matter.  some people have such mild forms of things such as cp and never would know it.  it will still be the same treatment.  if things are hard for her in school and we feel like we need some sort of diagnosis for accommodations to be made we may do it at that time.

so theres a little more info on hypotonia for any of you curious readers!  wish me luck today!  maybe ill show her that wikipedia says we need ei :)

new year goals

i have a few goals for this new year.  even though in a month or so they will probably start fading away in my mind.

1) ORGANIZE YOUR LIFE, DANA!!!!!  I royally suck at this.  so my goals are to write monthly to do lists and weekly to do lists b/c crossing things off a list always feels so great!  Buuuut I haven't started this goal yet.  With Stamp Out Cancer, I am using all my free time running around collecting silent auction items.  I don't have time to do anything extra out of my regular cleaning duties.  But as soon as thats over, I will buy storage tubs and attack the spare (junk) room.  Hazels clothes have taken over the room and they need to be organized my size and stored away.  And all the baby stuff-swing, tub, carseat, etc.  I am hoping my brother will help me build storage above our garage door and along the walls.  Having a small house + a child = MESS!  Children come with A LOT of accessories.  I just need better organization skills.  And it feels great being organized.  I just have to get there.  I also plan to get rid of more of Tyson and I's clothes (even though I just did) and sell to Plato's closet.  We are tight on cash since I'm barely working so I could use the extra money.  I need to get creative buying shelving from yardsales and repainting it for storage of toys in our living spaces.

2) Reconnect with hubby.  Tyson and I are very much in love, but Hazel takes up a lot of our (my) brain space that we forget about each other at times.  So I made little love cards for Tyce.  12 to be exact.  1 for each month.  It has money or a gift card and a note to where we are going or what we are doing for the night.  I used Christmas money and gift cards we had so I didn't have to spend any extra money we should really be saving.  Some months might only have $1 for a redbox movie and some have $50 to a fancy restaurant out of town.  This is a way we have a commitment for time for each other at least once a month, no if, ands, or buts about it.  Its a good way for me to have time away from Hazel too since I would prefer to be with her every second of every day :)

3) Shit I forgot my 3rd goal!!  Obviously it wasn't super important then.  It could have been along the lines of no judgement of other people, working out, or saving money.  I will try to do all those things too.

neuro appt

hazel had her neurologist appt today.  it was confusing.  we thought the main reason we went there was b/c of the head growth but this dr seemed confused.  she said her head was in the 53% and when we questioned her she went and asked the nurse and came back and said 87%.  still different than the 95% the dr said.  but the dr seemed mostly concerned about her 'obvious low tone' and how she is 'very behind in her milestones'.  maybe this chick doesnt know that its developmentally normal to not walk until 18 months.  i know hazel was slightly behind in other milestones but not extremely behind.  hazel had good strength to pull an object, grasp small objects, and no feeding issues, but her feet bend back to her shins and she has slip through when you pick her up.  so what.  (you can tell my tone about the situation has changed).  she said the low tone could be from a problem in the brain, muscles, or spine and she thinks hazels is a muscle problem.  so she wanted to start with 11 different lab tests-blood and urine.  she said then send us to childrens in st louis for a muscle biopsy.  and then do an mri where they need to sedate her.  i think she said a few other tests but i kinda got lost in all the info and visualizing in my head the trauma my child would be enduring through all this.  she also said she needs 'the therapies' 2x a week.  so get ei here stat!  so we sat around and waited for these 12 scripts (labs plus therapy, which she forgot to give) and tyce was not liking everything that just went down in our first appt and i thought i was going to puke.  we finally left and were supposed to drive over to the lab but just skipped town and headed home when i found out how they would have to collect her urine.  she was done for the day and so were we.

i know i thought i wanted an answer to why she has low tone, but now i think i dont.  yes probably some of the reason is b/c it involves putting hazel through pain when we dont even know if any of this stuff will give us an answer.  but mainly ive realized today-why do i need an answer?  what does it matter if they tell me hazels 19th chromosome is twisted or she has rhinoceroscephalatitis?  i have a label.  it doesnt change our plan for her (at least i dont think it does if it is a static condition).  we will still continue therapy and my daughter will someday still walk, run, and play even if she is a little clumsier than most.  we have decided that right now since the concern isnt with her head any longer, we will hold off on testing and try to increase therapy to see if her tone improves.  i truly do not believe we will get an answer from the testing just from past experiences with students i have had that have similar situations.  i dont want put hazel through all this crap (and $) to find out they dont know why she has MILD low tone.  i know i sound crazy from going from one extreme of wanting answers to now having the opportunity to get the answers and not taking it.  but we do feel its the right choice, even if hazels dr thinks we are crazy too :)