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 :)

my brother rocks

my brother recently created a rather touching blog entry that i wanted to share.  please support stamp out cancer in anyway!

big head baby

so i cant remember what i updated on in my last blog (and apparently im too lazy to look), so ill just give you info on the last month.  hazel started pulling up around her birthday and really loves to be standing a lot of the time now.  this week she has started moving her feet while standing-so a few steps here and there while holding on to things, but not sure if its considered 'cruising' since she really doesnt cruise too far.  last friday we had a booster flu shot and pt appt.  i asked them to recheck her head measurement and it went up again 2% in a month.  not a lot, but still shouldnt be going up that much in a month i guess.  so her head is now in the 95% which i guess is considered macrocephaly.  the dr was going to her sons christmas concert so we didnt get to talk to her.  so we went on to pt and i thought she had improved so much in a month and to me doesnt seem as 'floppy'.  maybe i read the pt wrong, but she didnt seem as impressed with hazel this month as i was.  and she mentioned some inserts for hazels shoes once she starts walking or something...  i sometimes feel like she is worried more than she says and makes little comments but doesnt discuss further.  so on christmas eve hazels dr called me from her home and discussed the head growth and she doesnt seem super concerned but is referring us to a neurologist.  im nervous but also glad to stop the 'wait and see' approach and just have a specialist look at her and tell me there is nothing wrong.  but she did say if they do an mri hazel will have to be sedated.  i do not like the thought of that one bit.  but maybe the neurologist will say there is no need.  who knows.  she is going to try to get us in as soon as possible so hopepfully i will hear next week when her appt is.  so i feel hazel is doing better physically, but i think the main concern is the jump in head growth.  in my opinion my baby isnt one of those 'oh my gosh look how huge that baby's head is' babies.  so its odd that its measuring so big.  i think it just means shes got a big smart brain like her parents :)

hazel got soooooo much stuff for christmas we are figuring out how to build more storage in the garage to keep everything in this small house.  and we still have 1 more christmas to go to on nye.  it was so fun watching her this year at christmas.  although the bags and paper really were her favorite things.  hope you all had a merry christmas and have a safe, fun nye!

I can't believe my baby is 1!

pt and dr update

my little lady is trucking along in the physical dept.  we had physical therapy a week ago and she was still refusing to put weight on her legs.  the pt seemed concerned by this and how low her tone still is all over her body (she could bend her foot back so her toes touch her shins, she still has 'slip through' when you pick her up, she sits with her legs so wide spread, etc).  so back to worrying me.  then over the week she started pulling up!  first on a cushion on the ground, then a little higher level, now this morning up in her crib :)  so yay i felt better about things!  then we had her 1 year appt yesterday.  it was traumatizing for me b/c they did a tb test, drew blood and couldnt find a vein on either arm, and then 3 shots in her legs and one bruised immediately and bled all over the place.  but the dr seemed a little concerned her head is growing faster and now in the 93%.  she measured ours and tysons is a little bit on the big side so this could be why.  but she said we are going to keep an eye on her physical condition and if she seems to still be having issues down the road (3 months? 3 years? she didnt tell me), we will do brain scans to see if there is another issue.  they like to always keep me worrying.  i dont like the wait and see approach.  but she is very smart and everything else is right on track so im hoping its nothing.  dr google had me worried all night so im trying to stay away from him.  blah!  okay off to clean and i will upload pics from the first bday party and post them :)

a few pics of my babe

october

about a week ago hazel started crawling :)  and with her laid back personality, she still prefers to sit still most of the time.  she will crawl a short distance to get something but isnt a whole house traveler yet.  shes taking it easy on us.  she is imitating a lot of sounds, blowing kisses, pointing to her nose, doing motions to songs, etc.  shes a pretty awesome baby.  shes a good eater and a good sleeper (most of the time).  and shes just smiley and happy.  sorry i need to upload pics soon and post one.

hazel's first birthday is in less than a month.  i cant believe it.  we took her to the zoo last week and i just started crying while walking to see the elephants b/c life is awesome.  im blessed with a great family and am so thankful for it.

tyson and i celebrated 5 years of marriage yesterday.  we celebrated by golfing (only for 5 out the 18 holes b/c i was whining b/c my toes and fingers were painfully frozen), massages, steak dinner, and settled into our villa with a hot tub and champagne at the end of the night.  i love that guy.

everyone have a happy halloween soon!