WOW Major lack up updates!!!
I am so sorry guys!! I tend to write everything on facebook anymore and have not been updating my blog properly!
Lets see:
Gillian - she is doing good, typical 7.5 year old though. Going through some stuff at school, mainly this is the year that we go from "playtime" to "work time" at school. She is having some issues adjusting. Mainly paying attention and learning the same stuff over and over and over.
She was accepted and recommended to the Gifted and Talented program at their school and that will help A LOT! We meet with the GT teacher, the Principal, and the Teacher on Weds for that.
Otherwise she is doing well, a little attitude but shes 7... Asthma is doing well... Knock on wood...
Alexander - He is... well... very much 4.5!! He has started to develop quite the attitude, which oddly is much appreciated. A lot of children with Autism do not have "an opinion" on things, and let me tell you what HE DOES!! However we have GOT to get it under control well before he is allowed to think it is okay. He says things like "NO DADDY! I DONT WANT TO GO TO MY ROOM!" LOL its cute.. kinda.. on days.. when he is not screaming it.. VERY LOUD... ;)
He is staring developmental therapy right away, FINALLY, after 4 years and being delayed 2-3 years in most spots we are NOW staring DT?! grr the system bugs me.
Caitilyn - WOW is she ever our SPIT FIRE!!! She is SOOO VERY 2 going on 7... LOL She is bright, energetic, FUN, very loving, and into EVERYTHING, however she listens very well for a 2 year old. VERY WELL, she is partially potty trained, THANK GOODNESS Alex is not.. She really is at such a fun learning age. I love it!
Makayla... Miss Makayla.. Always keeping us on our toes.. Ya know, when I found out I was pregnant with Maky Moose I was not trying to get pregnant, she was very much a shock really, C was only 6 months old.. We were like eh, we will deal with it.. better now then before we got rid of all the baby stuff. (we did get rid of a lot though)
I had a HORRIBLE pregnancy with Makayla... HORRIBLE.. I was in and out of the hospital with high blood pressure, at one point they were talking possible strokes, damage to liver ect,
Then Mooses birth... I was induced 1 month early because of high blood pressure, they needed to get her out asap. I told them do NOT give me pitocin that fast, it nearly killed me with Gillian.. well as some docs are, mine totally "knows his stuff" and he gave me pit to fast..
He broke my water at 1 pm, I was like a 4 ish.. 5 maybe I don't remember specifics. That is when all hell broke loose, he decided to go work out.. WTF?! less than 20 minutes later my baby "fell out" on the bed, no nurse under her, no doctor, no nothing.. I grunted, I did not even push and get came out... My mom grabbed her up, she was the first one to touch my baby girl.
Moral of all of this is that Moose needs things HER WAY... She has a plan here, no matter what anyone says.
So, Moose is born and we know right away there is something wrong, my mom kept telling me she had cranio-synostosis, which is what my sister, my dad, and his nephew had. I talked to the ped about it at 1 month old, he was not worried.. typical.. I would learn that they are never really that worried until you put her freaking foot down hard.
I was nursing her, they had me stop nursing her and pump and bottle feed because she was pukeing and not gaining weight.. well that did not help so they switched her to formula, that did not work, she had a weight check in February, she was 3 months old on the nose, I think it was the 5th, I told him there, I AM VERY WORRIED, she has craino synostosis.
I was told AGAIN, that he did not think she had it becasue she was well rounded on her head, she just had plagiocephaly (flat head) however he wanted to do a CT scan because her top soft spot was back further than it was supposed to be.
So, he did the CT scan on Feb. 12th, on Feb 13th (a friday) HE called me himself.. and told me yes she had a closure of her lambdoid suture and would need surgery.
She had her surgery on April 6th, I thought our journey was coming to an end..
Boy was I WRONG!! She was in OT and PT mainly for her neck issues, I kept saying there was something more wrong with her. I was worried about something called "Chiari Malformation" I was told and I quote "Nah, that is very rare, its not something we need to worry about with her" this was by the plastic surgeon..
Come to find out, the neurosurgeon (and the plastics)KNEW about the CM before surgery and attempted to make things larger back there in hopes that it would pull out.
It did not, at her 3 month post op check up with her NS he scheduled an MRI of her neck and spine to check the CM to see how bad it was, he was hopeful it had fixed itself.
Sure enough, she still had a full Chiari Malformation, and it had not improved at all, well pre surgery it was 1.4 mm now its 1.2 however that can be positioning, it can be the difference in radiologists .2 mms is not enough of a change to be accurate.
So, the plan of action was to go home, let her grow, lets hope and pray that the cerebral tonsil will pull itself out of the foramen magnum. We were to watch for things such as decreased appetite, crankiness, visual problems, reflux, breathing difficulty, heart rate issues, noisy breathing ect..
Well, those issues have started to come back a bit, so we go back to the surgeon on October 6th, we are working on getting a swallow study done, ect.. SO I will know more later but now I do not.
Cerebellum – governs movement
Pons – contains centers for the control of vital processes, including respiration and cardiovascular functions. It also is involved in the coordination of eye movements and balance
Temporal lobe – processes hearing, memory and language functions.
Medulla oblongata – contains centers for the control of vital processes such as heart rate, respiration, blood pressure, and swallowing.
Occipital lobe – helps process visual information.
Cerebral Tonsil - the part of her Cerebellum that hangs between her Foramen Magnum and her spinal cord.
Foramen Magnum - the opening at the base of the skull, all brain matter is supposed to stay ABOVE this, but in Makys case it does not.
Monday, September 28, 2009
Friday, May 15, 2009
Hey guys, sorry for the lack of updates, things have been SOO CRAZY around here!!
Mondays we have Alexanders Speech and Makaylas feeding therapy.
Tuesdays we have Doctors appointments (I have to schedual things on certain days like this because of how busy we are) We also have Makaylas OT appts.
Wednesdays we have Makaylas PT and Helmet appointments
Thursdays we have Alexanders OT
Fridays I TRY to schedaul off to clean my house!! Most of these appts are 30-60 mins from the house, and then Gillian and Alex have to go to school to so I have to be here certian times of the day to get them.
OYE Its been sooo busy!!!
However, busy is a good thing!!! It means we are healing and getting better, it means I still have my babies in my arms to make me busy, so while I may be whineing a bit from time to time, busy is a VERY good thing.. I would HATE to be bored right now..
Makayla is doing exeptionally well!!! Its amazing at how well she is doing!! Everyone is amazed with her.
The most major issues we have had post op have been fighting with the helmet!! Its horrible, however its doing its job.
Makayla is sitting with lots of support (she is 6 months old now!! We are 5 weeks post op) She is trying to roll, and she is a completly different child than she was pre surgery.
We did confirm the Chiari Malformation, which means that her brain was pushed downward into her brain stem, this is probabably causing headaches and numb limbs (which is why she isnt grabbing things like a 6 month old, HOWEVER she is improving!!)
This may require another surgery if it causes her more issues, OR it may clear up and heal over time now that there is room for things to move in there.
Alexander is doing well!! Talking and actually communicating alot.
Caitilyn is AMAZING.. She is 90% potty trained, still having issues at the dinner table and in the car, however thats all part of the process. In the last week shes had maybe 6 accidents!! YAY CAITY!!!
Gillian was refered to her schools Gifted and Talented program!!! YAY GILLY Shes doing very well too!
I forgot to mention that during our post op follow up clinics they had sent Makaylas information (pictures and bloodwork) to the genetics doc, he wants to see us now too. MAYBE we can get some answers!!!!
Friday, April 24, 2009
Wednesday, April 22, 2009
Monday, April 20, 2009
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