summer

wow, im sorry for the delay in updates. things are going pretty well here for now....holds breath. on day 3 post op of zach's adnoids and ear tubes he ran a 101.5 fever, really high for him, and was wheezing. we took him to the weekend clinic, got a new antibiotic and came home. yesterday was his last day on that antibiotic, after about day 4 of the new med he was feeling much better. seems like we dodged the bullet!

we had a nice fourth of july with some great friends, you may remember the posts about "snowflake" or "ladybug", we had a nice night of watching fireworks letting the older kids play and eating some yummy food. "snowflake" who is now more referred to as Julie-bug, is doing well also, she also just had almost identical surgery as Zach, on the 2nd, she also had her tonsils removed, and seems to be a champ!

Zach seems to be resting better, less snoring and mouth breathing, though they said it could take about 6 weeks for that to really stop due to swelling from surgery. seems like Zach is also hearing more, he is more alert to noises and turns to us talking to him some times. YEA!!

Mikey and Chance are getting ready to attend a 3 day summer camp, at a special needs camp (peaceable kingdom) from 8am to about 4pm on the 15th-17th, they went back in may for a 1 day camp and seemed to enjoy it, so hoping this time they still enjoy it. we go in a couple days to register and pick up their tshirts and turn their meds in for the camp.

last week mikey also became the proud owner of his pallet spacer, a big hunk of metal under the roof of his mouth conected to his teeth that we turn with a "key" 2 times a day to expand his upper jaw. he will be in this for about 6 months.
i will try to do better at updating hope everyone had a safe 4th of july!

summer=water

growing up that was always my motto, when i was able to get in the pool and enjoy the sun and water, that ment it was summer....so in that case today was the first day of summer....in a few years for me. lol. i took the boys on post to a pool to check it out, i had a good time, the boys enjoyed as well. chance started the pool time off by hanging on my neck, he is such a loving boy but man is it annoying to have him hanging on me always. tsk, i shouldnt say that...i love it, sometimes. but new situations always make him nervous, so the pool being a semi new thing for him was one of these senerios. but we swam for a couple hours, discovered many hours later that i didnt apply enough sunscreen for any of us, sigh.

i got good news last night, finally got a email from san antonio, we have our evaluation on july 29 and 30th, we will need to arrive and check in at 7 am....7 AM??!!! eek its soo gonna be a long day. zach will be put thru the ringer...lab work, vitals, xrays, possibly mri, ect. the second day of the eval will consist of actually seeing the 3 specialists there, the pedi ortho, pedi surgery, and pedi pulmonary. im ready to get this done and see what they say, what they think of the scoliosis, what they plan to do and how it will benifit zach. if they decide that he does qualify medically for the titanium rib placement it will be a series of surgeries, the inital one and then every 6 to 12 months he will need to go in and have the rib expanded until he hits puberty and isnt growing at the rapid rate any more.

i also have more news on zach's upcoming surgery for ear tubes, and the sedated ABR, he will also need to get his adnoids out as they are enlarged, probably causing the mouth breathing, snoring, and also blocking the ear area not allowing the fluid to drain as it should. im also going to talk to the doc on our pre-op and see if we cant get his tonsils out at the same time, just because the adnoids and tonsils typically go together. crossing fingers.

is it friday yet?

Well im slacking again, these updates seem to be getting harder to do, the only reason I can think of is that the boys are always in to something, sigh.
Some news recently found on Zach-man, the urologist wont be able to perform the testicle drop with the ear tubes, simply because of the clinic location, gggrrr. Oh well, so then we thought we would be able to get his ear tube and ABR surgery scheduled and done soon, but the audiologist is booked until the end of june, early july. Sooooo I guess in the next month or so. The spine center in san Antonio is booked out until july for the consultations, so assuming they get all the ducks in a row from all the information they need, looks like that will be july too, and then surgery 1-4 months later. Everything seems to drag. But the up side is , things are in place and even if there is a wait, we have the process started.
Zach goes to see the cardiologist tomorrow, im excited, really hoping to hear good news about the echo that was done a couple weeks ago. Crossing fingers!
The boys are doing really well with homeschool, and I must say im so proud. Both boys are now doing double digit addition, may not seem like a big feat for a 8 year old, but chance actually grasped the concept much easier than mikey, so I am thrilled! We haven’t tried to do subtraction with double digits or carrying digits. Boys are doing well in math, along with the double digits we have done many fractions and working with money as well. Mikey is reading everything in sight, chance has the ability to read, but I think he is just unsure so he holds back. Mikey has mastered nouns, verbs, and other parts of speech. With them doing so well, we have decided not to stop for summer, in addition to them probably forgetting half of what they have learned, I also think we may be able to advance more if we just stick to it. So we will probably do 3-4 days a week, all year long.
Well I know there is more to update with but im out of time for now

surgery surgery surgery

well here it is nearly june, been busy planning out surgeries for zach. yuck! when we had our last surgery with the brain bleed i really really hoped that would be the last surgery he would ever have to endure. but i guess life has other plans. luckily these arent emergency surgeries so we are able to plan them out a bit. the first one is for tubes for his ears, and a sedated ABR to test his hearing, we were hoping to have his urologist also present and get his testicles dropped, but unfortunatly that wont happen as both doctors cant get together for the surgery. the ear surgery will probably happen in the next couple weeks.
the other surgery we are planning is a more invasive one, in san antonio. its for a titanium rib. we havent had the consult yet, but judging by all the litature and other doctors he should be a prime canidate for his scoliosis. this consult will be 2 days in itself, the surgery will probably be 1-3 months after the consult. the recovery time for this is a couple weeks with no complications and since were from out of town, 1 week extra to monitor out of hospital. so needless to say it looks like we will be down in san antonio for awhile. after the inital surgery we will need to go back every 3-18 months, depending on growth, to allow them to expand the titainum rib thru a smaller surgery.
summer is also coming, its getting hoooot here. :) well its 1 am, time to hit the bed. nighty night

its May already???

so so sorry for the delay in postings, hopefully yall havent given up on us:) things here are going well. Zach is into his 2nd full week of no overnight feedings with the pump!!! he now gets 8 bolus' of 125cc thruout the day, still getting 1000cc a day, but were able to have his last feeding around 930 at night and he sleeps without the need to be connected to the pump...what a wonderful feeling. LOVE the progress. Zach has also been making progress in the standing area, he is challenging himself LOADS, he is letting go of objects and standing on his own, for good lengths of time!!! he is so proud of himself, and we are so proud of him too!!! he has even managed while standing in front of me after i let his hands go to take 1 to 2 steps towards me on his own!!!!proud mommy moments!
were preparing for hubs to head to the field soon, orinally it was from the 1st to the 23r but has been changed, so we will get him home a lil longer. we finally got zach's referral in to see the specialists in San Antonio for the titanium rib consult. Zach had his ECI annual last week and during that time they took measurements and discovered his legs are now off by 1/2inch. :( so i guess that is more proof that the scoliosis is worse.
wed we will see a new ENT and see what he thinks in reguards to his hearing, the possibility of tubes or just the sedated ABR testing. and on friday he will be seen by the pedi psychologist again and see if after reviewing all of his scans and reports and doctor notes she has anything new to tell us or help us with his head hitting. i will try to be better about updating hope all is well.

neuro follow up

wowzers its wed. already?? its been a crazy week, harolod has been working wayyyyy to much, drama at work has kept him from being home. hoping this weekend is different. monday we had Z-man's neuro visit, i went into the appointment armed and ready, i had zach;s medical records i have and was ready for a fight. well whats that saying...if you are ready it doesnt happen?...but be unprepared and the worst will take place? the neuro doc was totally different, he wasnt rushed, he answered questions, he didnt beat around the bush. he took his time. best of all when we left we felt validated and not pacified. from his stand, zach is making big strides! he was impressed. i love it when zachy can impress his doctors. zach's head size hasnt grown, still 46cm, been this way for i dont know how long. dr wasnt too concerned said that as long as he is progressing its not a big deal. he did tell us there may come a point when he doesnt progress anymore, but i dont believe that:). the neuro confirmed my belief that zach does indeed have cerebral palsy, he said basically what CP means is "something neurologically is causing motor control problems" and though he gave us a verbal diagnosis, he didnt put it in writing, said he didnt think the "lable" would do anything extra for him, since he is getting so much therapy and stuff now. he said that the type of CP zach has is the hypotonia type, causing him to be floppy and not the spastic type,where the muscles are contracted(something we knew) i believe he said the type was called ataxia cerebral palsy...but dont quote me.
Tuesday was mikey's 8th birthday!! we will celebrate this weekend. he had his first psych therapy on his birthday as well, it went good and we were also able to schedule zach's first visit in next week, not a moment to soon since he has now caused two callases on his fingers, 1 he had bleeding yesterday:( hopefully she will have some ideas for us. the neuro also reccomended zach seeing a psych for his abusive behavior, said its very likely a part of the CP.
Chance had another ocupational therapy today, he is making great strides in it and his therapist seemed to think he will continue to make strides, just has to warm up to the situations and undestand he is safe. very happy to hear that. she had a whole session with no meltdowns!!
Mikey is doing really well in the the ocupational therapy as well, he is practicing lots with sequencing, fine motor, and i can see it helping at home as well!! we LOVE mikey and chance's therapist, Mrs. Karen!
next week zach will also see a new dentist, im hopeful they will have some better advice for his constant teeth grinding than "its typical" he has actually ground his teeth down a lot:(

id like to leave this post with prayer requests, i just learned that there is another CDH baby, a girl, up at scott and white, she is on the heart and lung bybass machine, called ECMO, while this machine is a life saving device, its a very scary one, and one that the baby isnt allowed to stay on long, please pray her lungs will rest well enough while on that she can come off soon and kick butt and get out of the hospital!!

Happy (late) Easter

hello all, ive been putting off updating, there is so much information to update on and i guess i havent had the energy to update, so i will attempt to do so now....

since the last update, Zach has seen the eye dr, the spine dr, and was suppose to have his ECHO done for cardiology. we have also been doing some discussing on possibly obtaining a few other diagnosis'.

first before i forget in the heap of all of the information, i hope everyone had a wonderful Easter and enjoyed being together as a family if possible. hope everyone was healthy and safe!

Eye dr... well since zach is a "special" kiddo, the boys eye dr wanted to see zach on a day when the doc's brother, another eye dr would also be in office, so we got that scheduled and he was seen by 2 docs on the same day. they were very patient and did a good job of checking what they could. his eyes appear healthy, no cataracts (one possible issue with the gene he is missing) and he appears to see well, its hard to say what he sees and how perfect at this point since he cant communicate that to us. we will go back in 6 months for another check. the worst part of this exam was the dialation of zach's eyes, he HATED being held down for that! overall it was a good visit.

the next day we saw the spine doc. zach has had a consistant curve of his spine ( the scoliosis) so far of 25 degrees, this time they went from a laying down xray to a sitting xray(not sure if that makes a difference) and said that in the last 6 months his curve has gone from 25 to 35 degrees...so thats a big jump. like i said i dont know if the new way of doing the xray had something to do with the change, but we were told we need to go to san antonio to see some specialists there and get a consult for a possible titanium rib surgery to help with the curve. im still waiting to hear back on the status of this referral. but i guess in the next coming months we will be headed there to find out what our next step is. (insert nervesness here)

we were suppose to have zach's 6 month ECHO follow up last week, but last minute it was cancelled until the middle of may, sigh.

next week zach will have his followup with neurologist, this is probably where we will also seek out answers to see if we need or should get some new diagnosis' for him. these new ones are cerebral palsy ( the definition of this is ANY brain damage done from conception to the first 2-3 years of life) with zach's brain bleed, brain atrophy, and a copy of his eeg report from less than a week old where it states (a diffuse disturbance in cerebral function was noted) to me says it plain and clear... ive had one doc agree with me on this and tell me that it would be hard to get someone to diagnosis this simply because no one wants the "blame" on them. sigh. blame is the last thing we have in mind. if he has this then he needs it noted so that he can recieve any additional help. and the other diagnosis' is a bit harder for me to swallow, i know its because of the "stigma" attached to it, and that NO lable changes Zach, but at the same time, no no no no no, mommy denial maybe? its, mental retardation, there i said it. why cant they call it cognitive impairment? so many other states do, but not Texas, sigh. the "R" word. bleh. but truthfully he is at less than a year old mentally, in some areas probably much less, so for the time being the lable is "severe global developmentally delay" and according to therapists, thats more than enough given his actual ability to communicate and act and do age appropriate things for him to recieve this diagnosis. the only reason i am even considering it is for zach, for his future, for extra help we may be entitled to to help him gain more ground. i will not believe for a moment there is any stopping zach, and that he WILL do it ALL, in his time. i dont want the stigma attached to him. i dont want people to see the "R" word before they even see zach. im torn. im at a crosswords and dont know what path to take.

we have also put in a referral for zach to see the psychologist that the boys are now seeing, for his self abusive habits, his hitting and punching of himself, he now does this and laughs about it :( and his biting himself. we will see if she has any experience in this and has any tips.

the boys have both been evaulated with this psychologist last week for their possible autistic traits. Chance was on the boarder for being diagnosed on the spectrum, but missed it barely, he will be seeing her (hopefully soon ) for behavior therapy, as of now she is calling it a conduct disorder i believe and will re-evaluate him in about 6 months. Mikey was also tested, however he did meet criteria, he is boardering between asperger's and ppd-nos, for the time being since she will be meeting with him 1-2 times a week for therapy she wants to call it ppd-nos, and may later change this. he will also be evaulated in about a year. mikey will begin his therapy on his 8th birthday, april 13th. its hard to believe his birthday is so close and we havent had a chance to do much of anything in means of planning anything. im waiting on my clone....

therapy wise here is how things are looking for zach

ocupational-she hasnt had much luck getting zach to try to do much, he has been "busy" doing his own thing...hitting his toys, hitting himself, or crawling to new spots on the wall to hit! she is still working on his feeding.....slow and steady wins the race i guess. 2x a week she comes out to do therapy, there is progress made, zach has just become difficult lately.

physical-she is also coming out 2x weekly. he is now pulling up to EVERY surface. she hasnt gottan him to cruise much on his own, or to let go of the surfaces. we will be picking up his SMO's (new foot braces) this thursday and hopefully that will help give better support for him.

speech-2 times a month. working on sign language, zach has no intrest. working on verbal communication...again no intrest. working on feeding...no intrest. sigh. slow and steady.

developmental-3 times a month, she works on a mixture of everything with him and helps us obtain sources for support, ideas, and so forth.

i dont know where we would be without all our wonderful therapists! they work wonders.

mikey is still in ocupational therapy 2 times a week, and chance has joined him, still unsure if it will be 1 or 2 times a week for him. mikey has been scheduled for his first psychological therapy, were hopeful to get 2 in a week, and im unsure yet for chance. like i said im waiting on my clone! :)

wwhhheeewww there you have it...thats the reason i was putting off the update, its just so much to type. thanks for reading, hope you all have a wonderful week!