Monday, December 29, 2008
This entry will be my catch up blog..........
Dec 21 2008 ---- For the first time EVER my little man was able to sit himself up from a laying position. Until this day he has always had to roll all of the way onto his tummy and then push up to sit. I was changing his diaper and he wanted up, he rolled part way to his side and used his arms to push up, twist and he was sitting! This is such wonderful news - this is showing us he is gaining muscle strength. He has yet to sit straight up -- BUT it is coming!!!!!!
Dec 24 2008 ---- Christmas Eve -- we headed to dinner at the in-laws new home. It was very yummy! Next stop, we all piled into the van and headed to the Christmas Eve train. Zach didn't know what to think at first his SPD kicked in and when the train started moving he had to close his eyes. I believe it was a combination of the movement, noise, and many people. I talked to him while his eyes were shut and explained what was going on, slowly he would open his eyes for a few seconds at a time. It got to the point where he kept them open and even waved to people as we passed by. Again even more wonderful news about Zachary!!!
Dec 25 2008 ---- Christmas Day -- What a fun day! Our family stayed in our jammies all day, I have to say this was the most relaxed day we have had in a while. Zoe had to help Zach with his presents at first but he quickly got a hang of it - shredding the paper into such small pieces. As soon as one present was opened he would quietly ask "mo?" and move on to another one.
Our holidays so far have been wonderful and filled with so much positive on the Zachary front.
I hope that all of your holidays going just as well!!!
Wednesday, December 24, 2008
1. Formula paid after detectable is met up to $2000 for the year ----- here is my sarcastic note for that -- thanks, but this in NOT a big deal NOR is it a triumph for us. The last bill I received for formula (one month worth) was for $1400. That $2000 will get us NO WHERE!!!!
2. They have decided after we meet our $2000 DME limit they will continue to pay for all of our DME. --- The problem here, we STILL do not know what is covered under DME
I was told we will have a formal letter in our hands by next week.......we'll see. I do not believe any of this until I see it in writing.
Sunday, December 21, 2008
Receptive Language: 15 month old
Expressive Language: 12 month old
Total Language: 14 month old
Zach's Real Age: 27 Months old
13 Month difference YIKES
I would beg to differ with the receptive language score, so would his other therapist that he sees.
Anyway these are his newest scores.
Feels lousy to read them but hey they are better then when he started ST 19 months ago so I guess there is a positive.
I have no time on my hands for anything, including trying to find time to get on here and blog.
Seems the only thing I do these days is talk on the phone to multiple people trying to figure out insurance woes or trying to get some type of assistance for when our insurance stops paying for things or speaking with Drs, making appointments ect.
On Friday I talked to CMS 8 different times. Thank God for them because they are wonderful!Every where we've looked we've been turned down because of our financial status but CMS is able to help us, only with our formula but that runs about $1400 a month (yes fourteen hundred no decimals) However, they will not be able to help with the rest of the supplies. I am so very thankful that they can help us with the formula though.
On Friday I also spoke with 2 different people from our stupid insurance company. The problem you ask.....the problem is they are giving us the run around and NOT letting us know what is and is not covered. Our formula which is a prescription (you can not get it over the counter) is NOT a covered benefit, yet you can fight it. So we have and what did we get..............$2000 towards formula for the year AFTER we meet our detectable AND we must pay a co-payment each time ---- how much is that co-payment? I wouldn't know they won't tell me. Obviously that $2000 will not go very far. I'm going to say it again Thank God for CMS! Our insurance is awful! I shouldn't complain, I know, we are so very fortunate to have insurance and a job BUT I can't help and feel the way I do.
The financial burden of Zach's condition is a lot. I pray we will find a way to make everything all right.
As I sit on the phone day in and day out all I know, all I see is the time flying by. I dream of the moment where the phone calls will cease and I can look at life in a new way......a way where it isn't all just flying by.
Tuesday, December 9, 2008
Yesterday was a really rough day for me. Not only was it a long day with 4 appointments but it was a trying day as well.
First stop was the dentist - this was Zachary's 2nd trip to the dentist. The first one 6 months ago he completely shut down and didn't regain himself until we were out of the office. This time they sent him back into another waiting area that he could hear and see all that was going on, I was prepared for a disaster. He shut down, the hygienist came and got us (it was the same one as before) and he warmed up a bit. She took us into a room instead of being in the open (they have an area that is chair after chair of kids getting their teeth cleaned) She told me it was because of his issues they will continue to put him in a room so we don't have such sever shut downs. Zach was such a big boy - he sat in the chair all by himself, he let Amy clean his teeth, he had no shut downs! This is huge for him - I was so very proud!
Then we came home and his new SLP came to the house for ST. We met her on Friday for an evaluation and I have to say I was less then impressed. At first I liked her and then she opened her mouth about him having a feeding tube and it was down hill from there. She told me she didn't "like when parents choose to place g-tubes and take the easy way out". No placement is elective - this isn't plastic surgery -- I didn't chose this for my son - it chose us and if he didn't have it he may end up dead. Well anyway I thought I'll give her one chance and see with a therapy session --- it was awful! She told me there is no such thing as a "true apraxic child" and that the only true apraxics are stroke victims. -- That isn't even true because what a stroke victim has is aphasia. She went on to say many other things that really rubbed me the wrong way. Needless to say I called EI today and switched back to our old therapy place.
Then we headed out the door to the GI where we got a little bit of good news --- Zach has gained some weight (2lbs) this is HUGE in 6 weeks 2 lbs he has never gained that much in such a short period of time. The bad news came as the Dr admitted he and his colleagues may be stupid because they have yet to find out what is wrong with Zachary. He believes that Zach's tube may be a life long thing now. I have to say as Kori told me "that is a mighty big pill to swallow" Yep she is right. Doug and I knew this would be long term but life long wasn't on our minds.
Even the Dr will tell you Zachary is a completely different child since his tube was placed. He is the most normal he has ever been his whole life. He said at this point we don't want to chance things getting worse again, if we had not placed the tube he believes Zach may have ended up dead. He is wondering a whole lot of things...maybe this is sever food allergy related, maybe it is a metabolic disorder we tested for and the test came back with the wrong info, maybe we haven't tested for something yet because it hasn't come to mind, maybe Zach is the first person to have whatever it is he has. Our GI was happy to hear we are still following up with the geneticist, he is going to have a talk with her himself to follow up and see what they can brainstorm together.
After our stop with GI our wonderful dietitian came in. She had the look of amazement on her face as she watched Zach for the first time ever playing around the room. She just couldn't believe this is the same kid she has been working with for 9 months. We didn't need to do much - no extra feeds or calories because he is gaining. Just learning to bolus without our pump to see if he can tolerate it. I also have to add some bolus water because he is not getting his fluids since his oral intake is down.
So see --- long day really not too bad of a day but not as good as it could be.
Monday, December 1, 2008
I'm back in a quiet spot lately.
Thanksgiving was good. I cooked the whole meal for our family.
Zach of course didn't eat much. What a difference from last year when he ate 2 plates of food. This year I filled his plate with a spoonful of everything and I think he may have eaten a bite or two of turkey, a green bean or two, and maybe one bite of mashed potatoes.
It is getting harder and harder for me to watch Zach around food. He just doesn't want to eat orally. He used to go thew a half gallon of rice milk in a day and now I've been lucky to get him to have one cup a day. Just this morning I gave him 1/4 of a cup of Cheerios (something he used to love) and he ate 10-15 cheerios, handed me the bowl, and said "all dum"
I'm so frustrated!
Last week I took him to see his pediatrician and told her according to his neurologist he had lost weight -- since she had seen him the week before she said "this will be easy enough to see if it is true" took him out to the scale and weighed him...........sure enough he had lost weight according to her scale as well........about a pound and a half of weight! Zach doesn't have weight to loose like this. The lack of oral eating is too much!
I called his dietitian today - we have an appointment for next week but she feels he needs to be seen this week instead. Right now she is trying to coordinate with the GI. She is also getting him in with in the next week to see a feeding therapist.
Zach is doing good regardless of the weight loss. His smile is still there, his energy is great. I wish I could take a lesson away from Zach and always be so positive!
Monday, November 24, 2008
The Bad: At the appointment Zach lost weight, over a pound to be exact AND they weighed him with fully clothed minus the shoes, a wet diaper, and his backpack for his feeding. Because of the backpack she minus the weight she got with it on from how much the backpack actually weighs and came up with 22lbs. I'm not surprised and I'm trying not to worry too much over it -- any scale can give you a different weight. I'm just counting down the days till we are back at the GI for a accurate measurement. December 8th here we come...........
The Gross: 11 o'clock feed today ---- not tolerated, at all UGH he was in pain and then afterwards started coughing and yuck, next thing I know he vomited all over himself and his crib (he was getting ready for a nap) Poor little man, he started crying, pointing, and saying "mom-meeeeeee ewe" I've changed the sheets and his clothes now he is resting peacefully.
So there it is The Good, The Bad, and The Gross of Monday November 24th 2008.
Wednesday, November 19, 2008
So the other day I was changing Zach and I noticed his legs were different lengths. I thought to myself "nope I'm wrong, this isn't right" so I did what any mom would do and looked at him for the next hour. Moving him into different positions and finally getting out the measuring tape to check yet again. I was right - his legs are different lengths.
We then went to PT and I asked if Ms Patty could look him over and remeasure so she did and she came up with the same thing -- different leg lengths.
I took him to his pediatrician this morning to have her do a triple check and she too said "hum different lengths, this is new"
Tomorrow morning I am taking him to the hospital for another bone scan. On December 2nd I am taking him to see the orthopedic surgeon. Hopefully this is something that just needs to be watched and won't cause any problems.
This is yet another sign of RSS.......asymmetry in limbs.
Friday, November 14, 2008
Wednesday, November 12, 2008
Zach is doing okay - he isn't tolerating his feeds very well and at this point he is about 90-95% dependent on his tubie -- meaning he isn't taking much orally these days.
We go to the dietitian tomorrow to increase his feedings and talk about what the next step will be with how much and how long they will be.
Tomorrow is a BIG day as well - Zachary is also having an ABR ran http://www.hearingcenter.com/services/abr.html because of his age he will be put to sleep and the test should take about 2 + hours. The good news is that we will have the results right after he is done - so no worrying like with all the other tests we've been threw.
Busy.....Busy ------ I wish life wasn't going by in the blink of my eye!
Tuesday, November 4, 2008
It wasn't until 2 months ago (just shy of Zach turning 2) that he received his official diagnosis from a developmental pediatrician - he indeed has "Childhood Apraxia of Speech"
No one can tell us why he has Apraxia. No one can tell us if or when it will get better and when Zach will be able to communicate verbally 100% of the time.
Zach has been in ST for over 6 months now and is making progress but for every step forward he takes steps backwards too.
We know that Apraxia is a neurological issue but without many people having knowledge that Apraxia exists there isn't much being done to help these children to learn why it is happening and how to fix it.
Please you can help by donating or spreading the word around about Apraxia.
Please forward this link to everyone you know! The more people who become aware of Apraxia, the more of a voice these children will have!!!
Thursday, October 30, 2008
Zach was fussing at 10 pm so I went in to check on him -- he was wrapped in his extension to his pump - so I lifted him out of his crib as I did so he started screaming and squirming. I went to move him slightly so I could help and as I did..........POP - out came his brand new button, with a full balloon (the balloon is what holds the button in place).
I screamed for Doug and I'm so thankful he is calm in a crisis - I ran to get the emergency supplies while he tried to calm Zachary. When I found them - Doug was the hero, the one who was able to stick the catheter in place. As soon as that was done it was off for the ER at our Children's Hospital.
Our experience there was awful! We were sent home without even a real look at Zach's stoma. They told us to call our surgeon in the morning...................UGH
SO the morning came and I called our Dr who said come in ASAP. We got there just in the nick of time because the catheter that we put in place balloon had dissipated. Lucky Zach's surgeon was able to get another button put in. He sent us over to the Children's Hospital (the clinic and hospital are attached) for a test to be done STAT and said "if this shows anything I will take him in for an emergency surgery" Thankfully the test was all clear and as the Dr put it "we dodged a bullet this time"
For now there will be no more night time feeds as Zach moves too much and this will likely happen again if we continue with the feeds overnight. Zach will now have 4 feeds during the day - hopefully soon we will be able to get them where they will only be an hour each, but we need to move slowly to see if he can tolerate them.
What a night and a day it has been!
Wednesday, October 29, 2008
Sunday, October 26, 2008
We are home from the hospital.
Zach is back to acting just like Zach – his imagination is running wild and he is running, climbing, jumping around like you can’t believe. If I didn’t see his “tubie” (this is what Zoë calls it) button I’d think he was a perfectly normal kid-o.
Surgery went longer then we thought – we were told it would be 45 minutes but ended up being over an hour and half. The surgeon came out and talked with us in the waiting room and said Zach did great, he was able to do the procedure laprascopically so that was a huge plus. He said we’d be called back in a little while to get Zach into his room. A little while tuned into a ½ hour which turned into an hour – when we were called to the nurses station and told that the OR recover nurse needed to update us on our son’s status – I was handed the phone. When I started talking I heard “we need you to come back into recovery. Zachary is having a very hard time coming out and his oxygen levels keep dropping” My heart sank as I repeated to Doug this information. Thank goodness Doug was there because I don’t know what I would have done. I’m not good at calming a scared kid but Doug on the other hand is wonderful. The nurse was able to get him stable as Doug held him trying to calm him. After he was stable we were sent to our room.
When we got to his room his oxygen dropped really fast and things were a blur we at one point had 3 nurses and a respiratory therapist in the room – the oxygen tank was empty and I remember hearing the one nurse saying “I thought you were going to get him stable before you came here” with the reply of “he was stable” and all the commotion of the respiratory therapist yelling about the tank – Thankfully she had a portable one on her. Zach’s levels dropped to 54 – they should be 98-100 with a child’s going no lower then 90. After that they put him on constant oxygen. His levels did dip here and there, but became more stable threw the night and they were able to take him off the oxygen at about 4:30 in the morning. Of course Thursday night mommy and Zach had no sleep as he was up every 15-30 minutes crying in pain.
Zach needed morphine every 3 hours for the first day. His last dose of morphine was the middle of the night on Friday. We have been able to control his pain since then with Loratab, although, he hasn’t needed any since Saturday afternoon.
The surgeon put in these red rubber bumpers next to Zach’s button to stabilize it and let his stoma heal better. He came in on Saturday to remove them and warned us Zach was not going to like it, that it would hurt and he’d need our help keeping Zach calm. This time Zach’s SPD kicked in and he just smiled at the Dr as they were being taken out. The Dr was in utter shock and told Zach how amazing of a kid he is!
Zach started his feeds threw his g-tube on Friday night. We were all so happy because he tolerated them well – no pain, no vomiting! He was also able to sleep most of the night, only woke a couple of times one of those time Zach was ready for more morphine after he received it he was back to sleep.
We did 2 more feeds at the hospital by Doug and me administering them while the nurse was looking over us. It was much easier then I thought, scary but not too bad. He tolerated both of those feeds as well.
The Dr gave us the okay to discharge as long as all our supplies were there and we felt comfortable. The nurse suggested we stay one more night but told us it was up to how we felt. So we decided to jump in with 2 feet. We figured since they took the IV out of Zach’s foot on Saturday and he was able to move around (and that he did – he was so tired of his room and loved being in the play room or walking around the 6th floor) that if Zach was feeling comfortable so were mommy and daddy.
We got home last night at about 7 – just in time to unpack, try and get some what organized with all of the new supplies added to our house and start our very first home night feeding. It went really well! We were nervous at first figuring out our pump and mixing the right amount of formula for in the bag. It all somehow worked out, we got everything together hooked Zach up and laid him down for bed. He cried at first for a little while but we walked away and within 2 minutes he was fast asleep. I checked on him twice all was a go, so I laid down for bed. Doug on the other hand stayed up for a little while and wanted to get up as soon as the feed was done. He set the alarm but it never went off. We all slept in without any problems. Zach slept the whole night and he didn’t feed his bed it all went right where it should, into his belly.
Of course we still have a lot to get used to – Zach is going to be doing 2 feed during the day for an hour each and his overnight feed as well. They told us this may change and he may require more feeds or longer feeds. – We will cross that bridge when it comes.
As for Zoë, she is doing really well threw all of this. She went to school both Thursday and Friday with little problem. Thursday she was able to go over to her friend Sarah’s house and play until daddy was able to get her. She woke up on Friday crying at 5:30am wanting Zach and mommy but Doug was able to get her on the bus with the promise mommy will be there to get her off the bus. I picked her up with a surprise of camping out in the hospital Friday night – we did and it was fun for her! She slept the whole night and woke up asking when she could go play with Emily. Zoë was very patient as we needed to learn some things before I could leave to take her. I’m so thankful to my friends for helping out with Zoë – it was good for her and a huge help to Doug and I!
Mommy and Daddy are surviving this is a big adjustment but I think it won’t be as long as I thought to get used to it all. This morning Doug took Zach to Publix, right now he is on his 10am feed, and when that is done we are going to head out to Target. I’m thinking, the more we can get out and do the better since no one has been able to tell us how long Zach will have his tube, I don’t want to be stuck in our home forever.
Thank you all so much for the positive thoughts, payers, help, and calls – this all means so very much to us! We promise to keep you all posted as time goes by.
Wednesday, October 22, 2008
Tuesday, October 21, 2008
WOW 6 months!
It all flew by in the blink of an eye!
I was sitting here 6 months ago thinking he'd never make it this far, that time would pass ever so slowly.
We are now fortunate to have added an extra 1/2 hour of PT and an extra day of ST. He needs these - so we are lucky he has a coordinator who understands this!
Maybe in another 6 months I'm telling you all how wonderful Zach has done, how maybe just maybe - he is done with some of his EI services!
I don't know how to tell everyone I'm really not as strong as they'd like to think.
I don't know how I'm surviving and keeping my family strong right now.
I don't understand how everyone is so proud of me, and says they admire me.
I don't understand if I'm doing things the right way.
As you can tell I'm having a hard time with all that is about to happen. My fuse is short, my tears are many!
In less then 2 days Zach is having his feeding tube placed. I've found support on a wonderful website but wish I knew someone in person to turn to.
I have the BEST friends in the world who have all offered their support in numerous ways because we don't have family around to help - you know, even if we had family here I think they would all be here anyway! I'm amazed at by how wonderful these people are in my life - and I have no idea what I would do without them! I am so blessed to have them in our lives! I have never known people who are not family to care so much about others, to put themselves out there and really help a family in need - maybe it is something to do with the south - yet most of us are Yankees ;-)
In less then 2 days I will be sitting in the children's hospital watching my son deal with another new struggle in his life. Hopefully a struggle that will help him survive and conquer all of his other struggles.
In less then 2 days I will start learning what our "new normal" will be!
I hope I have the strength to get threw it all!
Thursday, October 16, 2008
My mind has not stopped racing since finding out all the information on Monday.
I have my ups and downs.
I look at my sweet little boy and think what am I doing to him, other times I look at his sweet face and know this is going to be what makes him thrive for the first time in a long time.
I am such a planner - if things aren't planned well in advance if drives me absolutely crazy. I've been trying to get the house in order and a list made for things to bring on our stay. Zachary's OT is going to have a list of what to bring to help with his SPD while stuck in the hospital. I need to remember little things to have packed for myself, as I won't be leaving his side. Zoe wants me to buy him a puppy she saw the other day that makes soothing sounds. Of course I'll also need to bring his blanket - or I'll be hearing bebe the whole stay with lots of tears.
I have so much going threw my head, from is everything going to get here for when we are home, to how does this work, to what to bring to the hospital, to what things will be like when we bring him home ect....ect....
I sit and wonder if this week is going to go by quickly or if it will feel as it is taking an eternity to go by...........
Tuesday, October 14, 2008
We have been threw a rough 2 years with Zach but things have gotten much worse this past year, really much worse the past 6 months. As most of you know Zachary’s size has been a constant issue – he has been failure to thrive since he was 3 months old and because of a pediatrician who (in my opinion) didn’t know how to handle a kid like Zach, it took us a year and a half to finally get into the right doctors for some help. After many long discussions, many doctors’ appointments, a ton of tests, a lot of therapy, and finally a larger decline in Zach’s weight and feedings he will be having surgery on 10/23 – next Thursday to have feeding tube placed.
To bring you all up to speed (bare with me as I know some of you know the story) – I knew something wasn’t right with Zach and went behind our doctor to get Zach into our early intervention program at 18mts – when I went to her to tell him the services he qualified for she laughed and said “they didn’t know him”, I in turn said “you’ve lost a patient” and took Zach to our new dr (I swear she is an angel on Earth)– who as soon as she saw him said “we don’t have time to waste” and sent him to numerous specialists saying she knew his case was too much for her to handle. Zach has been tested for everything under the sun trying to find what is wrong – as everyone he has seen agrees something is not right!. For the last 6 months we have been on a better track but still don’t have all the answers. By now I’m at my wits end as he sees his pediatrician, geneticist, endocrinologist, GI, dietician, neurologist, allergist, ophthalmologist, ENT, developmental pediatrician, ped dentist (this isn’t for normal visits like one would think – he has a very small, high pallet, and extra teeth – so needs to be monitored more closely), and now will be monitored by the ped surgeon, plus his SLP, OT, and PT. You’d think with all these people they could sit and talk, brainstorm for what is happening to Zachary.
He has been diagnoses with FTT (failure to thrive), in a full year Zach has only grown 3 inches and 3 lbs (normal growth is 4-5 inches and ½ lb per month). Zachary also has Dyspraxia (motor, oral, and verbal) – not a late talker, his brain knows what he wants but the signal does not go to his mouth to let him speak. He is coming a long way - from no sounds to sounds, to can say some words although not all the time – we try to use sign but the motor dyspraxia is affecting this, so our main source of communication with him is a PECS system. Gastroparesis: This is a delay in the emptying of the stomach. We are waiting on an official diagnosis of Russell Silver Syndrome – basically a very rare form of dwarfism. He has hypotonia aka low muscle tone – this is affecting him in many ways one of which may be his eating another is how clumsy he still is because he doesn’t have strength like a typical 2 year old. He also has SPD aka sensory processing disorder. Last but not least is his anaphylaxis to milk and plain food allergy to soy.
Russell Silver Syndrome tends to be diagnosed clinically which makes it very tricky if the Geneticist hasn’t seen very many cases. We have one Geneticist who says “I think RSS is it” and one who says “I’m not too sure” There is a blood test which we just ran yesterday but chances of finding it are so slim (7-10% for one of the tests and 20% for the other) even if the test comes back without it – RSS is not ruled out. In mine and Doug’s heart we feel this is what Zachary has.
Right now our priority is to get Zach to grow this will be done with the help of the feeding tube – it is nice to know all of his Drs agree with this being done. Zach will be receiving constant feedings threw the night as well as 2 more feedings with his pump during the day. We will be able to feed him by mouth as well (if he will take it – as lately he doesn’t want to eat) the more he takes by mouth the less he will need from the tube during the day. They have told us this will take 3-4 months before we notice how well it is helping him.
When we asked the surgeon how long he will have the tube he replied “some people have them for life” When we asked the GI the same question he replied “it will not be a short term thing”
Here is a link to the exact tube Zachary will be getting next week --- http://www.mic-key.com/index.asp?page=product
We are thankful that they will not be trying the NG-tube first as our stay in the hospital would have been roughly a month. Right now we are looking at a 2-3 day stay if the surgery goes as planned. He is planning on doing it laparoscopic instead of an open surgery but will do whatever is in Zach’s best interest once in the OR. We won’t know until the day of the surgery if they will be placing the tube like a g-tube, j-tube, or a gj-tube.
We were also told about another surgery they typically do at the same time called a Nissan but for Zach’s case right now they will not be doing it – however it is a possibility in the future.
Both Doug and I have a million emotions running threw us right now – the life we were used to is about to change. We are always reminding ourselves it is going to be difficult but it isn’t something we can’t handle and it is what is best for Zachary now and in the long run!
I don’t want to forget about Zoë – she has been the best sister that has ever existed! She has asked questions, and looked at the tube. She has been telling Zach he will be fine and that it is “cool” he’ll get to eat threw his tummy. She even came up with calling it a tubie hose. I’m not 100% she gets this – heck Doug and I still don’t completely get this! We just hope that we can keep her feeling special as she is and always has been.
Thanks for reading and sorry about the repeat for some of you – I wrote and just needed to get it all out at one time. Repeating myself is not so easy anymore.
Monday, October 13, 2008
Zachary is getting his surgery on Thursday for his feeding tube.
I am still waiting on a call, as we were unable to speak with the GI (he was too busy and we had no appointment) We did get a chance to sit with his ARNP who went back and asked questions with him as needed. He agreed on the surgery and now the question is which type would he like the surgeon to preform, what type of tube (g, j, or gj) and if a nissan (http://en.wikipedia.org/wiki/Nissen_fundoplication) also needs to be done at the same time. So, there is a little more waiting to be done - a little more that is still unknown - BUT the main wait is over Zach WILL be getting this tube and very soon!
The surgeon told us there were 2 ways the procedure could be done and he will do which ever the GI would like - but he likes to do it laprascopically. He did say he wasn't going to use the peg tube (this is a picture of a peg: http://www.oralcancerfoundation.org/dental/images/peg_tube_page.jpg ) he likes the one that is flush with the body because with the peg it can be pulled out too easily and is too long on the outside of the body, also because normally you would start with a peg and in 2 months go back and switch to the tube he is going to use - so might as well do this as the only step. I didn't catch the name but I'm assuming this is what it will be http://www.mic-key.com/index.asp?page=video . If the feeding tube is all that is going to be done he said Zach will have the tube placed for 24 hours then start his feedings, he will be in the hospital for 2-3 days. This also leads me to another question for our GI - if Zach will get admitted the day before surgery - this was talked about at some point before.
We did find out that the feedings should all be at night with 2 during the day, while still allowing him to eat by mouth, the more we get him to eat by mouth the less he will need to have via the pump during the day. The formula for his pump will be 100% covered by insurance because it is a medical necessity (they told us children who take this by mouth insurance will not cover) so we lucked out there. We will need to get Zach a pump, they told us they will work on getting him the smallest pump that they can find. I'm hoping it may be one of these, hopefully the top one (http://www.zevex.com/enteral/pumps/) as we will be taking it with us when we leave the house and it is easiest for him in the mini backpack.
I could go on and on but I'll wait for another day...........
Sunday, October 12, 2008
Here is a picture of my little man taken 2 days before we get the big information about the feeding tube.
The more I think about tomorrow the more worried I become.
Yesterday I had called Kori. Not knowing she was in town, she asked me to come meet with her - knowing I was down and worried about the upcoming appointment on Monday. I reluctantly went and met her at the park. It was a good time and just what I needed, time with one of my best friends, and some fresh air.
We had a great time!
Zoe and Alex (Kori's son who is a day younger then Zoe - her BFF) got to play in the park, run around, and ride the carousel. They had a blast! Zach sat on a park bench the whole time - I think he enjoyed himself as he could see the tour trains that were driving by, and didn't hesitate to point them out to Kori and I.
Kori (who is also photographer) was also able to get some great shots of the kids. I'm sharing this one, because it is Zach - his personality and all - a perfect shot of my little man!
Thanks Kori! As always, you know how much I cherish the pictures you get of both of the kids - but the ones of Zach truly hold a special spot in my heart because no one captures him as well as you can. I swear you are the only person he trusts (besides Doug, Zoe, and I of course ;-) Thank you so much for the park, shopping (I needed that LOL), and dinner - it was a GREAT afternoon!
As our day is coming to an end today - I ask for positive thoughts, and prayers from anyone willing to send them our way. Tomorrow is going to be a long day and I hope I am able to maintain a positive attitude no matter what we find out.
Saturday, October 11, 2008
We have had a long, bumpy road we have been following lately and it isn't coming to an end anytime soon.
Last night I went out with a friend of mine, we didn't do much - went out for margaritas (the best I've ever had ;-) and guacamole at a restaurant I've never been - it was fabulous! Good food, amazing drinks, great conversation -it was like I could breathe for the first time in a long time. I needed last night more then she will ever understand. I am so thankful for her! Thank you so very much Tracy!!!
Last night also helped to remind me of my other friends and family (you all should know who you are - my FL friends, my MI friends and family, my online buddies from BBC, my TNT girls, and a special friend in Chi-town) that I am thankful that you all have cared enough to ask questions, be there when I've needed to cry, be there just to listen to all my venting, laugh with me, or just sit in silence with me. If you guys are reading this "Thank You!" Your friendships means so much to me!
Friday, October 10, 2008
I just got the best news EVER.....................Our insurance is going to cover 100% of Zach's testing for RSS!!!!!
I am so ecstatic I was jumping up and down after I got off the phone!!!! Even Debbie (our genetics counselor) was so shocked that it was going to be 100% covered, she has never seen this test covered before!
I swear this is a sign.......maybe, just maybe, it will show up and we will with out a doubt have a name for what is going on with Zach! I felt like if we were going to have to pay for the test that it would definitely show up with nothing, and that still doesn't rule out RSS - just because that would be our luck. Now it is going to be covered ---- please, oh please, let us have an answer!
I need to remember one test only has a 7-10% chance of finding it and the other 20% - if we find nothing with this test, RSS is still not ruled out. I just want to have a definite answer on this, I need to have a name.
In my heart I know this is what Zach has.
It is much harder knowing nothing then knowing something!
Thursday, October 9, 2008
Today little man had to say "buh biiii" to his favorite therapist, Ms. Kristin is going on maternity leave and will not be back until the beginning of January.
As we were leaving Zach gave her the biggest hug, kiss and of course a big "biiii". I had to stop myself from crying, as did Ms Kristin. It is amazing how close you become to someone you see 3 days a week for the last 6 months Ms Kristin almost feels like family - heck, the whole therapy place feels like our extended family.
We wish Ms. Kristin the best of luck with the delivery of her new baby girl! Hopefully the next couple of months will fly by for us!
Monday, October 6, 2008
My mind is spinning - I go from alright, to not so good, to down right depressed - I'm feeling so very manic right now. I wish the world would stop just for 5 minutes to let me breathe a little bit.
I had changed Zach's appointment with the GI ARNP from the end of this month until this afternoon. My hope was that the Dr would be there and she would have him come in, this way we would see him before seeing the surgeon on Monday. That was wishful thinking as Zach's GI is out of town this week.
Zachary got weighed when the MA brought him back - too bad she wasn't consistent like she should have been - the scale showed him a whole 2 1/2 lbs larger then he is. The ARNP took him and did it the right way -- Zach has lost weight since our last appointment there 3 months ago - 1 1/2 lbs lost to be exact.
Zach's medicine is causing side effects so we are to take it down from 4 doses to one just at night to see if the side effects go away. If they don't we are to stop the drug ASAP.
We had a long talk about the feeding tube and from the sounds of it Zach may end up in the hospital for about a month. She said in a perfect world they would start with a ng-tube (http://en.wikipedia.org/wiki/Nasogastric_intubation ) for a week to two weeks to see if he tolerates tube feedings - if he does then at that point he would have his g-tube placed, but because of his age she said the surgeon may just go straight for the surgery. I'm not sure how I feel - I want to help him, but if it could be something he won't tolerate I'd hate to put him threw the surgery - at the same time it is something that can be taken out if it isn't working for him. She also said when this all happens she would like to see him being fed by the tube during the night with 1-2 feeding during the day and supplements by mouth during the day as well.
OF course we won't know what is happening for sure until next Monday when we meet with the pediatric surgeon - he is the one who makes the final decision. After that appointment we are to head straight to the GI's office for an impromptu appointment with him, the ARNP, and Zach's dietitian.
I think my mood swings are plain and simple - they are happening because we are so unsure of what is going on. Pretty sure he is having the tube, but which one?!?!? As it seems there is no other way to help him grow, but unsure of when it will happen - in a week in a month?!?!?!?
I'm longing for the day where my head stops spinning!
Thursday, October 2, 2008
This is something I just found with the most in depth detail of what is going to be taking place.
Wednesday, October 1, 2008
This morning we had to go to Zoe's school to see her receive her award. 44 children in the school (one from each class) received an award for the Character of Fairness - "Zoe has exemplified fairness by: always thinking about how her actions will affect others. She always tells the truth, takes turns, and plays by the rules". I was so very proud seeing my little girl becoming such a big kid. Standing up there as these kind words were read about her, in front of so many people. What a proud moment as parents it was!!!!
After that was done it was home for Zach and I, and off to work for Doug. I had calls that needed to be made. One of those calls was to our geneticist. We found that there are 2 test she can give Zachary to determine RSS...
One test has a 7-10% chance of finding RSS
The other has a 20% chance of finding RSS
These test will cost $900 ---- $900, 900 dollars --- for the possibility of not finding anything! If we find nothing, it DOES NOT rule out RSS! If we find something, that is all it is, something - a name for what is wrong with Zach. RSS is not fixable, it is treatable - but no matter what life will always be different for Zach.
So, we could pay $900 to find nothing, or maybe to find something. No matter what, the treatment is still the same - a feeding tube, and/or growth hormone injections.
Our geneticist and our pediatrician both say the same thing - if we need 100% proof (but the only way we get that, is the slim chance the tests say positive) go for it. If not, we are taking the right steps towards helping Zach, the same steps we would take knowing it is RSS without a doubt.
According to our pediatrician there is enough in her opinion to just go ahead and call it RSS. Our geneticist wants to observe him again before giving her opinion on the matter. Since he has not grown since our last appointment she feels RSS might be what it is but needs to see him again.
Doug and I are going in on Friday to discuss all of this with Debbie - she is from the genetics department. I want to weigh out all the pros and cons before we make a decision one way or another on the testing.
I also needed to make a call to the Pediatric Surgery Department. Zach's evaluation is all scheduled for Oct. 13th - Just 2 weeks away. They told me that his g-tube surgery will be anywhere from a week after to a month after that appointment, depending on the Drs schedule. Really right around the corner. I have so many questions, so much concern BUT overall I know this is the right thing, the right way to help Zach.
Decisions - I can't wait for a day where I have none to be made!
Monday, September 29, 2008
Although this picture might not tell the whole story it was a fun day.......
Saturday morning we headed to the Zoo. It was a blast! Zach was into the animals, Zoe was into the animals, even Mommy and Daddy were into the animals! It was a long day, but such a wonderful family day - no crying (well, once on the carousel - but it wasn't his fault his SPD kicked in), or tantrums. Just a day full of giggles and smiles!
We are still waiting on hearing from the Dr. She did call this morning to have me call a new ENT so that we can get an appointment with him so that Zach can eventually get the appointment for his ABR to be done.( http://www.hearingcenter.com/services/abr.html ) They got us in rather fast and Zach will be seen Oct. 28th - then we get the ABR scheduled from there.
I hate all the red tape - Zach has an ENT, one we happen to adore but because he isn't at the children's clinic what he says needs to be double checked by an ENT there so that the ABR can be done.
She had not heard back from our GI and told me that if she does not hear from him by Wednesday she will call and see what is going on.
I hate waiting but that is the point we are still at. Waiting, it is such a cruel game!
Friday, September 26, 2008
We walked in - Doug, Zach, and I. I'd like to say we were all a bundle of nerves but I think Zach was just Zach (so easy going, didn't know what was happening) The first thing that was said to us is "You will not hear anything bad today, you will not hear anything you already didn't know"
As we sat we were handed a report. An 8 page report that we went over in great detail. Most was information we had given to the Dr 2 weeks ago. The rest was his findings.......
A. Developmental Language Disorder Expressive -- there is a clear dissociation between the Expressive Language and the Receptive Language, All developmental domains with the exception of EL are in a typical range for age. (His Expressive Language Assessment put him at 14 months)
B. Dyspraxia (http://www.dyspraxiafoundation.org.uk/services/dys_dyspraxia.php) Within the DLD-EL there is a clear dyspraxic picture present, independent of other diagnoses
C. Autistic Spectrum Disorder, ruled out. Zach is not manifesting signs/symptoms of Autism.
D. Hypotonia (a long paragraph with info I'm not even sure I understand)
E. Fragile Child Syndrome - basically we baby him too much and that a child who has issues still needs to be treated like an average child that is the same age. (but who wouldn't he looks and acts like a 1 year old)
While we were there, Zach's size also came into play - the DP is very worried about his size. We know Zach is small, we see it at every Dr we go to when they plot it on his chart, we see it everyday at home or around other children - BUT the way the DP put in on paper tells the whole story..........
Weight <2%; 50% for 12 months
Height 2%; 50% for 15 months
While we were there - he had a geneticist come in and look at Zach - he said "I think it could be Russell Silver Syndrome" http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome
This is the same thing I asked our ped about months ago, the same thing she said was the only thing that really fit Zach. Right now we are waiting on hearing back from our geneticist so that he can be tested.
Overall I am happy with how the appointment went - we have 8 pages of good, solid information, diagnoses, and referrals. I received so much more wealth of information then I could have hoped for.
The DP normally sees kids back in 1 year but wants to see Zachary in 6 months. I hope when we see him then I can write about more good things.
Wednesday, September 24, 2008
The main test for MD came back negative!
The iffy news...some of the other tests came back questionable. Zach's Dr called me in to the office to let me know, yet I'm still unsure as to what it all really means. For now she was calling his neurologist and giving him the results - we are to see him in November and she wasn't concerned with Zach getting in sooner. She told me that the Dr will re-order the same test and this one would be used as a baseline, and that he will also run an EMG. As far as it sounds MD for the time is ruled out but still not 100% out of the possibility.
The bad...at OT today Ms. Jerry started his re-evaluation - it didn't go so well. As Zach is beginning to regulate himself with his SPD we are noticing more and more where he is lacking in other areas. She will give me a full report when we finish the testing. For right now some of it is showing Zach at more of a 15 month old level - far behind where we want him to be.
Tomorrow is the day I've been waiting for yet at the same time dreading going to. Tomorrow is the day we follow up with the DP. It is amazing at how fast the time has passed...2 weeks came and went in the blink of an eye.
Let's all hope for some good news tomorrow!
Tuesday, September 23, 2008
Tuesday's are always our long therapy day.
Zach started his day with OT - he did his listening therapy without a fight. Ms Jerry wanted to do finger painting with him, so we thought we would give it a try. My little boy surprised Ms. Jerry and I as he reached for the paint with not just one finger unsteadily reaching for the bowl BUT his whole hand. Zach dipped his whole, opened hand right in! I know the look on my face was priceless as it is a normally a fight to get his whole hand dirty. This wasn't without consequences - he had to stop frequently and look at his hand, squishing up his nose in disgust - but he got threw it all on his own - no tears!
Onto PT - more surprises there........Zach didn't give Ms. Patty any static! He went in and got right to work. Jumping on the trampoline like an old pro, trying to walk the steps without fighting, kicking and throwing the balls.
Then of course there was ST.... Zachary did a good job. He showed Ms. Kristin how he isn't swallowing, so they had a tea party - I think Zach thought it was funny. He is attempting to say two word phrases - not that the words are coming out right but he is trying, today he was trying so very hard to say "bye cow" which sounded more like "bi do" - this is such a long shot from where he was!
Ms. Kristin also went over the preliminary score of the Praxis test that she gave Zach last week. Nothing new........just a solid confirmation of what we already knew to be true - Zach is apraxic and according to the test it is sever. This is information we knew and we will deal with - a little hard seeing it on paper that way but nothing we can't handle!
Sunday, September 21, 2008
It wasn't the best of our weekends, but it was a nice weekend.
Since it is the end that means the beginning of a new week is coming, that means......
I will be waiting on pins and needles to hear from the Dr. I'm hoping for good news --- a test that says "NO MD"
Not only are we waiting for that test to come back but we will also be hearing from Zach's SLP how his test went that he took last week.
It also means our 2 week wait is coming to an end, we will be headed to the DP on Thursday for his answers on what is wrong with Zachary.
It also means another crazy week filled with therapy.
Added to the excitement of the week is Zoe's 2 days of dance. We are still not in a grove from having a nice break over the summer.
Also curriculum chat for Zoe's kindergarten class.
So our week looks a little like this...
Monday - waiting for news, curriculum chat
Tuesday - OT, PT, ST, dance, more waiting
Wednesday - OT, ST, more waiting
Thursday - ST, DP appointment, dance, more waiting
Friday - nothing (for now) YIPPEE, hopefully the waiting will be done by this time ;-)
It will be great if this week is filled with GOOD news!
Saturday, September 20, 2008
A day that was going to be all outdoors fun ended up being an indoors fun day.
We woke up to rain - what a way to put a damper on what was going to be a celebration.
We've decided to wait until another day to go to the zoo, instead we will play inside, watch movies, and chill out at home.
Washouts aren't all that bad - they make for a nice cozy family day!
Friday, September 19, 2008
Tomorrow will be a fun day for all of us (knock on wood).
Tomorrow is the day we will celebrate Zach's birthday with some friends at the zoo.
I've been showing Zach pictures of animals on the computer. So far I think he will like the Apes the best as he just about jumped out of my lap with a HUGE grin, loud giggle, and a monkey sound. I think the snakes will be what he likes the least, when I showed him on the computer he screamed "EWE!!" as he looked away.
AHHHH tomorrow is almost here!
Thursday, September 18, 2008
Thursday, September 11, 2008
Last night 4:30am to be exact - Zach woke up screaming. He started to pacify himself so I let him be. This morning when I went in to get him there was vomit all over his bed. Guess he had woken up, vomited and went back to bed.
It has been months since we've dealt with this. This morning it was undigested potatoes from dinner. Normally it was meats, solid veggies, or beans that would come up - never potatoes. I'm so upset! I'm not so sure what this means, but I'm thinking his meds aren't working.
Gastroparesis is the pits!!!!
Wednesday, September 10, 2008
Last week Zachary had his evaluation, this week was his first session. Ms. Patty is his PT. She was still taking some time watching to see where he is at.
PT will be a good thing for Zach - that is once he learns to like Ms. Patty. Right now he isn't very fond of her. I'm not too sure it is her per se, or the work she is making him do. The work is VERY hard for him. With Zach, he will always try to do something his therapists want him to try - BUT if he can't do it or it is too hard he will give up. He also likes to redirect the therapists- Ms Kristin ans Ms Jerry know him too well to let him get away with it - I hope Ms. Patty learns quickly with him!
Thursday, September 4, 2008
Today was the day we found out that Zachary does not have autism!
I told the DP that Zach has SPD and he said to me "I'm going to say one word to you........Autism" I looked at him and nodded my head. He replied with "I can tell you right now that Zach does not have autism!" Immediately I cried - happy tears - all this time, wondering if that was what was wrong with Zach and it isn't.
Today is the day that I still can't type what is wrong with Zach. However, we still know something is wrong. We take Zach back to the DP on the 26th - that is the day we will have answers.
Today is the day we heard:
"yes, he has developmental delays"
"yes, he has hyportonia" http://en.wikipedia.org/wiki/Hypotonia
"yes, he can not speak"
"yes, something is wrong"
Today is the day that we heard everything we already knew.
Today is the first time in a long time I've had weight lifted off of my shoulders!
Today is the beginning of yet another wait - a 20 day wait, I can handle the wait!
Today is a rather good day!
Today is the day that we thought we may be waiting 12 months for. Yes, this DP has a 12 month waiting period. He see cases of high need first (Zach was on of those cases). I feel so bad for all those parents with the much longer wait then we have had.
Today is the day I've been patiently waiting for to happen. - We are so very fortunate to have gotten in fast.
Today is the day we take Zach to see the Developmental Pediatrician.
Today is the day my nerves are shot. I've heard such mixed review on this Dr - most of which have been rather negative. Yet, at the same time even the parents I've heard from with bad news still say he is an AMAZING Dr.
Today is the day we may get an answer. To have words to tell people what is really wrong with Zach, has been something Doug and I have been searching for this whole time - Today might be that day.
Today is the day we still might hear nothing. This, is my worst case scenario which has me going crazy - I don't think I can handle one more "We don't know what is going on with Zachary" quote from a Dr.
Today is finally here!
Wednesday, September 3, 2008
OT went well, well - kind-of, Zach was a tad out of sorts. He was having a very bad day with his vestibular system yesterday. Before we even got out the door for therapy he had fallen 4 times in a 5 minute period. He didn't enjoy doing any of his work, I could tell it was so very hard yesterday for him. Poor little man was just so different yesterday.
Then came his PT evaluation - He was able to do what his PT (Ms. Patty) wanted him to do for the most part. BUT Zach didn't take too well to her. Hopefully next week will be better. I'm not sure at this point how much he will be seeing Ms. Patty.
Of course after that comes ST. He did okay. Ms. Kristin and I went back over the scores of the test -- had she had given him the test 20 days later when he turns 2 the scores would have been completely different - not for the better and that was VERY hard to see!
Thursday, August 28, 2008
Wednesday, August 27, 2008
I knew the expression part of the test was going to happen.
I knew Zach wouldn't do well....
After all, how well can a child who is hardly verbal do on a test to find out where he is at expressively?
Ms. Kristin told me to prepare myself for the scores of the test - I didn't have high expectations, because I know my son is not verbal. I guess I didn't prepare myself enough, or maybe I did - maybe it just hurts because it is brought back to my attention just how bad the situation is.
I don't have an age range to type out for this. I simply don't know. What I do know is Ms. Kristin started the test and didn't get very far. She was frustrated, she even said so. She is going to go over how to score the test with another SLP because this test wasn't designed for a child with Apraxia.
See, the problem with Zach is he knows what he wants, he understands so much more then he is given credit for, yet he has no way of verbalizing. Zach is able to now point to things when he needs them, he is also able to sign with prompts (very few signs on his own), he can most of the time use his PECS so he can express himself - It is just that he can't do it verbally.
I know all of this! This is the life we live, everyday, trying to figure out what Zach needs, what Zach wants without any verbal cues.
I need to take a step back and remind myself ------ 5 months ago Zach went in there and I described him as the child you wouldn't even know is in the room. Now you know Zach is in the room - he makes sound and let's us know when he is happy, or unhappy - he makes his presence known.
I knew this wasn't going to come back with good news like yesterday -- I knew this, but I wasn't as prepared for the hurt as I thought I was!
Tuesday, August 26, 2008
Zach has been in OT and ST for just about 5 months - next month (month 6) is when he is due for his re-evaluation. Ms. Kristin will not be here (she is having a baby) so she has decided to start the evaluation early.
Today was the start of the testing. First step comprehension........
Ms. Kristin didn't think he would go so far so she had to stop in the middle and print out more sheets for herself. The test isn't done, we didn't have time to finish it - as Zach went further then expected (the more the child does the longer the test)
My sweet child, the one who walked into therapy 5 months ago having a comprehension level less then his age at the time - Zach was 18 months old and had a comprehension level of less then a 12 month old child.
I am happy to say that as of today - 5 months after the start of therapy Zachary is comprehending that of a 3 1/2 year old --- now I have to remember the test isn't done so that may go up or stay the same. Zach is 3 weeks away from turning 2 and is comprehending at a level a year and a half above where he should be at.
I also need to remember, I should never think of what he can't do and focus on what he can as it is truly amazing!
Thursday, August 21, 2008
There was an article about Daniel Radcliffe, the guy that plays Harry Potter, that reminded me of you and Zach... http://movies.msn.com/movies/hotgossip/8-18-08_5/?GT1=28101
With his duds-doffing Broadway debut in "Equus" looming, Daniel Radcliffe is getting a few things out on the table, including his health issues. In an interview with Vogue, the "Harry Potter" star, 19, reveals how he suffers from a mild case of dyspraxia, a coordination disorder that affects motor skills (it's often mistaken for clumsiness) and can make simple tasks such as tying his shoes a challenge. "I sometimes think, 'Why, oh why, has Velcro not taken off?'" he quips to the magazine. Radcliffe says his acting career began at age 9 when his mother realized his confidence needed a kick-start and let him audition for a TV version of "David Copperfield." "I was having a hard time at school in terms of being crap at everything, with no discernible talent," admits the actor, who begins flashing his bits on the Great White Way on Sept. 5. A rep for Radcliffe confirms his dyspraxia diagnosis, telling the London Daily Mail, "This is something he has never hidden. Thankfully, his condition is very mild and at worst manifests itself in an inability to tie his shoelaces and bad handwriting."
Dyspraxia is another name for Apraxia - it is how they refer to the same disorder Zachary has in the UK and other countries. In the states you can hear Dyspraxia but it is more commonly called Apraxia. I am so glad to see a famous person come out about their struggles and how hard things can be for him it really gave me hope that Zach will be able to do things on his own. I hope it reaches others who struggle every day with the same disorder and gives them hope as well!
I can see the persistence in Zach's eyes when he can't do something and this like my friend Melissa said "It just made me think of Zach and how he could still have a hidden talent no one knows about yet!" You are so very right Melissa and thank you for sharing this with me, giving me a little sunshine and hope today!