summers coming

im still here, for anyone who is reading this, its been a busy timeframe and i just havent had it in me to update. the boys are doing well. Mikey had his ARD meeting at school this week, and i am not pleased with how it went, i feel like his issues were ignored and even though i had documented facts from 2 docs they didnt offer what he needed, i feel like im going to be calling another ARD at the begining of next year...joy. as of now he is simply staying on his current 504 for dyslexia instead of them doing anything with his PDD/asperger diagnosis, so this means he wont be getting the extra help from the school ocupational therapist for his dysgraphia(handwriting problems) and other fine motor skills, i was hoping he would recieve this in school and he could still continue at his outpatient therapy for his sensory needs...sigh.
chance is doing well, he is so talkative and busy body, i am so looking forward to him and mikey being able to play and get out this summer, hopefully and then he will be going to pre-k!!!!!! yippie. according to the psychologist chance is VERY intelligent scoring in the 97% for 5 year olds, the test was taken just weeks after turning 4....the doc said he was sure chance would be bored for kindergarden when he starts, i had to tell him he will be starting pre-k....oh brother...maybe they will skip him ahead a bit or at least give him some more challenging work.
Zachs reports came in from the geneticist, metabolic screening, negative, thyroid issues, negative, fragile x dna, negative, chromosomal issues, negative, however if the geneticist thinks there is still probably reason the skin biopsy will be done to completely rule out chromosomal problems as not all can be ruled out with blood tests. we go back in july so we will see. zach had his renal ultrasound done, but havent recieved the results just yet, hopefully they came out normal as well.
this is our last weekend before school is out, one more week of school! one more week of mikey being a first grader. wow.
so in between all the normal therapies...mikey twice a week, zach 4-6 a week, and all the doc appointments and errands, i still gotta do the end of school party and whatever else is going on there, so i may not be around for a bit......
happy summer!!

ARD meeting and therapies

well its been a few days, Zach seems to be doing much better!! he hasnt had (knock on wood) fever since yesterday morning, and even then it wasnt more than 99, such a relief!! his button leaked some yesterday and just barely today, so that is also progress!! i think it was a bug and its passed. zach is on day 3 of his antibiotics, im sure this is helping as well.
since saturday night we have had nothing but trouble with the oxygen concenrators, on sunday night i got a replacement, only to have it stop working yesterday and again he was placed on his oxygen tanks, today we recieved yet another concentrator, a brand new one, new style, with a pediatric flow meter attached, so i really really hope this one lasts!!

Zach had ocupational therapy today with ECI, he "wow'd" linda, the OT again, she was amazed at his ability to sit, even though today he was doing a very poor job at it....he was too hyper and too wiggly, she said he was doing great. he loves to play "row row row your boat" this is where i sit him up and hold his hands, when the song is sung he rocks himself front to back, its so cute, and it is building his arm stregnth..sneaky sneaky. Zach got to "ride" Rowdy, a inflatable bouncy horse type thing in therapy today, he seemed to really enjoy sitting on it, ll upload some photos soon.

Mikey had his ocupational therapy today as well, this will be his last session until next thursday, thanks to the holiday we will get this thursday and next tuesday "off" so im pretty happy, though it may prove to be a not so good thing, as he wont get the sensory imput he does in therapy, and without this he is more easily aggervated and distracted. therapy has really proven to be a big help for him.

i met with a lady from mikey's school today to discuss the upcoming ARD meeting and to turn in mikey's eval. report from the psychologist today....while talking with her she threw me for a small loop...im not up on all the terms of the ARD stuff just yet...if there are any moms here that are, please leave your imput, i dont want to mess mikey out of getting help. she mentioned to me wanting to just label mikey as ADHD and calling it OHI (other health impairment) instead of using the PDDNOS diagnosis, saying that if she used this he would be put into PCCD(?) classes...i asked what this ment she said its a smaller class for kids who arent as high functioning...part of me thinks this is where he needs to be...not that i want to hold him back at all...but i do want him to get the services he needs, and i know he works much better in his after school tutoring since its a more one on one time with the teacher. im afraid if the school uses the OHI term mikey wont recieve much help and if he doesnt get a good teacher wont stand a chance....but like i said i dont know how things work, anyone dealt with any of this before? if it helps we are in texas. thanks

Zach had another therapy this afternoon, this one he was just as wobbly and hyper, he was in such a good mood, it was nice to see. he is trying so hard to crawl, its amazing, his legs know what to do, but his upper body doesnt.

mikey had a school program tonight, he was singing some fun summer songs, and seemed to enjoy himself a lot. the only on who did NOT enjoy?....Zach..he screamed his head off, with tears rolling down his face...the loud noise of the singing, clapping and cheering was too much for him....guess that means no rock concerts for a couple years....darn ;)

i have a small update on Kayleigh Freeman, the "one pound miracle" her parents talk about her memorial service on their latest blog entry and have photos and video they put together, some of the photos are from the wonderful organazation NILMDTS (now i lay me down to sleep) they are beautiful. the faith and will this family has is just amazing, please continue to lift them in prayer!. http://kayleighannefreeman.blogspot.com/

our nursing schedule is still a work in progress, the full time day nurse i thought we had already to go, isnt working here, she isnt even doing a day a week at the moment, i dont have a clue what happend. the nurse we have instead for now, im told she wont be a our primary but is filling in, is great, i dont know who will come on as our primary or when. ive actually been thinking the last few days about not having a day nurse, or at least not 5 days a week, maybe something like 2 days a week or less, i dont know. all i know is im kinda tired of guessing who will be here, explaining all of zach's history and his needs/wants, dislikes/likes over and over, when in the end it would almost be easier to just do everything myself. at least without a day nurse i would have my house to myself during the day other than therapies, i wouldnt have to worry about that schedule, just do what i need. though there are times when it is nice to have the help. i dont know, i dont want to make a hasty decision, but by the end of the month if our nursing schedule isnt set in stone i think ill be making some sort of decision on this matter.

our ARD for mikey is next week, please if you have anything to add, im taking all suggestions, things to ask for in his IEP, things not to agree too, i dont want to go in uninformed, its like going to a car dealership alone...they see "female...dumb" and automatically see $$$. Thank you for your time:)

check this out:)

i found a wonderful site on blogspot, another mom of a special needs child "giving back", i have her listed in my blogs that i read...
anyway the website is...
http://jaxsonsblankiesforbabes.blogspot.com/
and Zach is on the page today, we recieved the blanket early this week, its so wonderful, we love it. what a kind donation of love she is doing. please check her page out.

austin trip

Today was our big trip, we traveled to Austin to see the geneticist.

First off thanks for all the well wishes on the trip….my worry about the new area….i have no idea why I was worried, once we got there it was a easy find and traffic wasn’t bad…maybe im just having flash backs from our nicu days in Houston, but Austin was a walk in the park!

We even managed to do a lil strolling in the stores and have lunch after. The clinic was great, very kid friendly, toys everywhere and since I had ALL the boys it sure was nice to have them somewhat entertained. The doctor was awesome! We were very impressed with her knowledge, and her kind and caring personality. We had a very deep discussion of both my side and Harold’s side of the family and zachs healthy history, luckily I brought in all of the records I personally keep for zach, as it was helpful to go thru the discharge summaries.

The doctor was quite shocked that during our nicu stay at s&w we didn’t receive a lot of the imaging, and things she thought we should have…and I agreed with her, I told her how we had to fight just to get him a hearing test prior to leaving and weren’t able to get a eye screening, about how the doctor referred to Zach as “a grow and feed baby” and basically avoided us at any cost, about how I had to coax the doctor to say he had scoliosis and not just “a curve of the spine” so I completely agree that our nicu doc at the second hospital failed us and failed zach. Had he had a follow up EEG or MRI done on his head there like it was requested by TCH when he transferred his brain atrophy would have been caught sooner, his seizures maybe sooner, and the blood possibly sooner…but anyway back to today…

After going over everything with a fine tooth comb, she began to examine zach, she felt his head, for any bumps or so forth, she called it “f….?” and said hundreds of years ago it was a procedure done to check for illnesses or something. Lol she placed zach on the exam table and looked at his back, his stomach, feet and hands, I noticed she looked at his hands quite a bit, then she measured his head and length and weight. She said that though zach is a big boy, most of it feels as though its fat, and suggested with him being hypotonic that we watch the calorie intake by gtube, I explained that we had 2 specialists who want him to loose weight and one who wants him to gain, so it’s a struggle. Zach’s head measured in at 3% on the charts and with correcting his age for being a preemie it was 5%. Zach I noticed is becoming a lil anxious at these appointments, as soon as I place him on the table he begins to look worried, but she talked to him and played and he quickly cheered up.

Once she was done she told me that the pads of his hands were a bit concerning to her, I had previously told her about the research ive done and the pallister-killian syndrome (sp) affecting the 12th gene? And she told me his hands could be revealing mosaic tetrasomy , when I asked her what this ment she simply said “mosaic just means a mix of good and bad cells…some affected with the problem and some not” then she said “pallister-killian syndrome is a mosaic tetrasomy” she explained that she was going to write up a list of tests to begin with and then we would meet back in 2 months to see if we need/want to do more testing. When the nurse came back in to give me the paper with the tests on it I also noticed the diagnosis’ that was listed, the doctor had made a few of her own, though not a surprise, but its officially now in black and white. The diagnosis’s are….CDH, Scoliosis,Cryptorchidism (undecided testicles) microcephaly (small head) and severe global delay. While im not happy or pleased to see any of these, im ready for answers and ready to start a plan. The bloodwork that was drawn today for the research group in Houston, both me and zach gave blood. I was worried about how it would go with zach and his veins…the nurse got him in one single ****! I was amazed!!!! The blood work was also for the following tests…
Chromosomes, fragile x dna (since mikey has asperger’s and chance also possibly) T4,TSH,serum amino acid, and she ordered a renal ultrasound to be done at the clinic here for zach. We were told they normally do not call for normal results but we can also contact them for the results in 20 days.

After we got home and I napped, and napped…. I looked up mosaic tetrasomy and found mosaic tetrasomy 12p, pallister-killian, one of the links I found actually noted that brain atrophy was a symptom of this, as well as sparse hair on the sides…giving zach that “rooster” hair, diaphragmatic hernia, GERD and others….so the fact that it is all listed there and that “his hand pads are concerning” tells me I wasn’t to crazy to think there may be something else going on, and if the answers come back negative that would be great, but it isn’t a far reach. alot of these genetic tests are done with blood, but many need biopsies to confirm, either skin or muscle, the disorder...so if the blood tests shows something as a possibility we then move on to possibly a biopsy to get the final result.

As always, Zach was a happy smiley baby, who caused a contagious wave of smiles thru the day. That lil boy sure can wrap the world around his finger. Not sure why we were picked but we sure were given a blessing with zach. Were so greatful.

Once we finished up there I thought of a conversation with another doc, very well meaning I know, but he told me he didn’t see any reason to see a geneticist for zach, saying “what will it change” and no it wont “change” anything, but it sure will be good to know what were dealing with, if its something mikey and chance may carry a trait for or be able to pass down, to help determine a plan of action for zach. In the end even with the grimmest outcome, its up to God and Zach, not a textbook portrayal of how the diagnosis will play out. Zach has proven himself so many times, he isn’t about to “settle” for anything. our follow up wont be until 28th july.