Saturday, June 28, 2008
Friday, June 27, 2008
Today is one of those days I'd much rather not be here to experience! As soon as we got in the room Zach was all thrown off. His attention span was nothing. He wouldn't use words (not that there are any to really use - more like sounds) or signs. The slightest movement from Zoe sent him into a tail spin like a plane falling from the sky.
At this point we are all unsure of what is happening to my little man! He is disappearing again! Ms. Jerry gave me some new strategies to try from home and we've discontinued therapeutic listen for the next 2 weeks to see if that has something to do with all of this regression.
Today, a whole new thing happened and I wasn't in the room for it (if I could have only been a fly on the wall) - Ms. Jerry called me back as soon as it took place..........
Ms. Jerry has been trying to switch up the swings that Zach is uses....today was a day for a new swing; a net swing........it proved to be way too much for Zachary to handle.........what happened on top of all the sensory problems with it though, was odd - she placed him inside and she knew right away he didn't like it but was determined to make him try it. The way he was angled however proved to be a problem as all of a sudden his breathing changed to the point of she was very worried. Ms. Jerry quickly moved him into a different position and again his breathing became very worrisome. She took him out and called me back into the room (we weren't in the room because Zoe was such a distraction for Zach today) I went back in the room and he was on his stomach on the peanut ball doing slow rolls to calm him. While I was in there Ms. Jerry decided it was time to try his wheelbarrows --- not a good idea - I witnessed first hand the difficulty in breathing she was talking about. We have no idea what caused this and I've never seen it happen before.....Guess we have one more thing to talk to our list of Doctors about.
Happy Friday to us!!!!! (sarcasm people, sarcasm)
We missed one day of ST due to my car misbehaving (UGH) it is all better now. That day also happened to be Wednesday and a very off day for my little Zach. I couldn't get any eye contact out of him and nothing much more then 'hiiiiiiii" all day long - oh and a bunch of whining, and crying. I couldn't even get the child to use any signs, or look at my hands for signs. It was a very frustrating day and one where he really needed to be at therapy.
Yesterday we did make it to ST and it was another bad session. At this point I feel like we've taken 5 steps forward only to take 10 steps backwards. Ms. Kristin had to be stern again, Zach was all over the place and had no attention span for anything she tried to do with him. She is questioning if he is starting to get some behavioral problems as well. I'm told this is common for children with Zachary's issues. It is just so hard to watch - everyday, your child who seemed so much better, getting worse - sometimes day by day - but the past couple days it is down to hour by hour, minute by minute - I never know how he is going to react to anything.
Today we have OT and I am planning on trying to talk to Ms. Jerry about all of this. I don't know what more we can do besides add more therapy time - which I know he really needs.
Last night I had the pleasure of being without Zach for a while - it was nice. Tracy, Phyllis, and myself took our three girls for a long 40 minute drive to dress rehearsal, that was only supposed to go until 7:30 but instead ran from 5:30 - 8:30. We had 3 tired girls and 3 tired Moms by the time it was all over. Thank goodness for McDonald's before hand, snacks for afterwards and 3 little girls who get along so well! Rehearsal time is always so hectic. I get to look forward to going back tonight from 5:30 - 9:30 (well if it runs on schedule) - note my sarcasm ;-)
When I got home Doug and I had a nice long talk about what is happening with Zach and all of his concerns - this is good because, so often, we try to avoid this conversation. I think it was great for Doug to be with Zach, all alone for 5 hours -- he was able to see more clearly what I've been dealing with.
Doug said Zach was wonderful when we were gone, no crying, or really fussing. He couldn't get him to eat dinner - but that is no surprise on certain days. Doug said Zach still sat at the table while he ate and just played with his food. Doug also told me how hard it is to watch his son - having such a hard time with things. There were no words spoken from Zach last night besides "b,b,b,b,b,b,b" and "ma,ma,ma,ma,ma" no signs used. For once I could see the real frustration and concern in Doug's eyes. That face that always remains so strong is being broken down. As strange as this may sound to some of you this is what I've been waiting for this...waiting.....
Wednesday, June 25, 2008
Yesterday was good! In OT Zach was doing all sorts of things he hasn't done before and it is so wonderful to watch - as I know it is work but he thinks it is all play. ST didn't go as well, Zach wanted nothing to do with the work Ms. Kristin was trying to get him to do. He had absolutely NO eye contact with her, Zoe, or I and was all over the place. Ms. Kristin and I were trying to figure out if something Ms. Jerry did in OT was affecting how he was doing with ST yesterday. We've never hit this kind of wall before. It was to the point that Ms. Kristin had to step up and be very stern with Zachary. WOW - mommy didn't like someone else talking to my kid that way - Sophie on the other hand knew she was doing her job and doing it right!
Let's wait and see what the next 3 days have in store for us....
Tuesday, June 24, 2008
Yesterday we received some news on Zachary's test - for the most part there were good things,
Blood work = normal
Urinalysis = normal
Ultrasound = normal
Biopsies = normal
Somewhat iffy news....
Urine culture: showed two different types of bacteria growing in it.
Really bad news....
Nuclear medicine emptying scan = abnormal (normal range is less then 84 minutes; Zach's stomach didn't empty until 119.48 minutes - the test was only 120 minutes long)
Zach has officially been diagnosed with Gastroparesis (http://en.wikipedia.org/wiki/Gastroparesis)
As for right now I'm unsure of what will be done, the Dr wants to discuss treatment options face to face and make a decision in July (we were put on a wait list to move the appointment up).
The Dr told the nurse to let me know that "Gastroparesis is not commonly found in FTT" so to me, that means this doesn't solve why Zach is FTT. It also sounds as if there are steps to helping him (although there is no cure, and we may never find out the cause) but because of his FTT they don't sound like good options for us - dietary changes, basically taking fats out of his diet (HA! he would be so incredibly small without fats), also there are medicines that they can use, but it is very common (I believe the nurse actually used the words "they will cause") that they cause extra BM's and Zach already goes upwards of 8 times a day - again not a very good option to have for a FTT patient. I am very worried I am going to hear the words "jejunostomy tube" --considering when we first saw the Dr and gastroparesis was suspected he didn't want to discuss treatment until he was 100% sure since the treatment can be very over whelming, and he did not want to cause unnecessary worry. As much as a feeding tube sounds awful, I have to say...it could really benefit Zach. My concerns over it are being pushed to the side, if it means Zach will be getting what he needs from foods.
Of course I really don't know too much about this whole thing....All I know is we've found another puzzle piece.....
Monday, June 23, 2008
It was a fun weekend - filled with lots of rest, just what we all needed.
Friday night we were able to spend some much needed adult time with our friends Jen and Alan. Mommy and Daddy were able to enjoy good conversation, some yummy food and drinks, and some really fun games of Catch Phrase and Trivia Pursuit ;-) Don't worry the kids weren't too far behind - Olivia and Zoe played without any "Mom, she's doing this, that or the other thing" and stayed up way too late. Janie (who is only 3 days older then Zach) and Zachary also seemed to have a great time with one another - they actually interacted - anyone reading this knows that is a HUGE step for little Zach! The babies (man really I shouldn't say that anymore - they are toddlers after all) got to go to bad at a normal time thanks to a crib and a pack n play. Thanks guys - as you both know we really needed that night!!!!!!!
Saturday was quite a day - since we were up so late, I'm not even sure how we all managed to roll out of bed. Somehow we did, Doug made a yummy breakfast for all of us, then it was off to the gym, and straight to Costco. Wouldn't you know -we run smack dab into Jen, Alan, and their girls - nothing like four parents trying to get errands done and over with with 4 little crabby kids (well the older girls were the crabs mainly) --- PRICELESS! I swear every time lately we go to Costco, we leave and it starts storming. This time it wasn't right over head but down at our house. The rest of the day was spent inside staying out of the storms.
Sunday was another restful day, avoiding storms ---- so much for the "Sunshine State" I shouldn't complain, we really do need all this rain.
Now it is on to our week......Can't wait to see what is to come!
Friday, June 20, 2008
Zach is good. Zoe is good. Mommy is surviving.
Some updates: Zachary has gotten into the endocrinologist - not until August, but he is in. He also got into the the geneticist - originally they scheduled him for August 20th but the Dr wanted him moved up to ASAP, we got a call moving him up to July 23rd and we were told he may still be seen sooner yet!
Therapy is going really well - in 8 weeks the progress has been amazing!
We did have OT moved from Thursdays to Fridays because Ms. Jerry-Anne is helping open a new office. Yet, again, that means our week has changed - instead of going 3 days a week, we now have to go 4 days to the office. Ms. Jerry has also added the therapeutic listening to be done at home - 2x a day for 20 minutes each time, spaced at least 3 hours apart. It should be fun trying to get an almost 2 year old to sit still for 20 minutes with headphones on. We will find a way to get it to work - we just have to, so that we can continue to watch Zachary's progress take place!
Progress is Progress!
Tuesday, June 17, 2008
I will be so happy if we could stay out of the children's hospital for a little while. It is sad (yet, nice in a strange way) when a parent can say that people know you and your children at the hospital. I could count 8 different staff members that came up to us today to say "Hi!" that have all dealt with Zoe or Zach at some point in the last 6 months.
Today was Zachary's Panendoscopy with biopsy(s)/brushing(s). The procedure was at 10:10 but we needed to be there by 8:10, which meant leaving the house at 7am to beat traffic. We got there with near perfect timing and everything went rather smoothly.
Zach went back without taking happy juice and went to sleep fine - thanks to the same wonderful anesthesiologists that has taken care of both of my kids. The GI came out 20 minutes later and told me Zach was fine and that everything looked normal, but he won't be able to say for sure until the biopsies are back. He also said he got "a lot" of biopsies. We are to call in one week for the results. Zach will be in some pain today and he should just take it easy, using Tylenol and warm compresses as necessary for today.
So that is it....the last test to be done....now bring on some answers!
Monday, June 16, 2008
The test went well - the Dr can call today (according to the tech) for preliminary results. For sure we should have answers no later then Thursday. The test was relatively easy and painless. Zach had to drink his rice milk with some nuclear meds in it - that took longer then we thought and I was told if he didn't hurry up we would need to put an NG tube in his nose. I made a game out of it for him as we were walking the halls at our children's hospital (thank goodness for their decorations). Zach finished in the nick of time. He had to lay on the table, strapped down for 2 hours. Every minute a camera took a picture of his stomach. Zachary was fine - quiet the whole time until the end when he had enough.
When we were done, the tech opened the door - Zach ran full force out the door waving to the tech and saying "buh-bye" over and over very fast - he was stuck, it continued until we got into the parking garage and no one was around - one last time as I put him in the car - this time it was only five times really fast.
My little man survived today, now for preparing for tomorrow.....
Sunday, June 15, 2008
Just wanted to share pics of "Little Miss"
She has been dealing with all of this too and has continued to shine.
Saturday was picture day for recital and she had to be all dolled up. She begged for me to take her picture - so here she is our little dancing star!
Friday, June 13, 2008
Thursday, June 12, 2008
What a change one day can make......
Zach had an amazing day (well after the test). Therapy went super good!!! I can't even put it all into words -- only WOW!!! We were at therapy for an hour and a half, right from there we had to get Zoe to dance.
ST (1/2 hour) - he was all over the place, a wild man, sounds were flying out of his mouth, for the first time ever he took a cow (puzzle piece) and walked it around the room (like the cow was walking) and he was just babbling away - WOW!!
OT (full hour) Zach was still a little wild man, he accomplished so much - the biggest thing for him was the swing (it is a fabric swing that he gets wrapped into - like he is back in the womb) for the first time EVER he wanted more, more, more (http://www.lifeprint.com/asl101/pages-signs/m/more.htm) - WOW!!
Then came dance, I've never seen Zach like this - EVER - he was extremely social, not just with the few Mom's he is comfortable with, but every single person in the waiting room (which was more then normal today) - he kept throwing a little pom-pom ball at everyone and giggling -WOW!!!
My son was AMAZING today - such a wonderful change is beginning to occur!
OH and did I mention - another word -------- "MORE", before he could sign it and kind-of, sometimes get "moe" out of his mouth but today we got a full out "more" - you have to listen really closely to him say it because the ending doesn't come out too clearly. To help you understand how he sounds - If you've ever heard a deaf person talk - that is exactly how it came out - think, Marlee Matlin. Now hopefully he will start to say it on his own, not just being a parrot. He didn't say it on his own but he was able to mimic Ms. Kristin and myself more then just his normal mimic of "moe" WOW!!!! WOW!!!! WOW!!!!
WOW ---- "Buh-Bye"
It went really well, I've got to thank his SPD for that! I Know thanking his SPD must sound so strange to some of you - but for me, it is because he goes threw so much. Sometimes I catch myself thinking about if he wasn't able to shut down, how would he cope with all these tests? I've seen him before the SPD was so bad - he fought tests being done - that was much harder to watch. SPD, right now, during these moments is like saving grace for me. It is much easier to watch him shut down then it is for me to see him struggling, crying, and fighting the tests being done.
He laid so still, arms up, fists clenched, eyes looking down and to the side (I think he was looking at the bed). He didn't move, and not a sound came out of him. The tech commented "if only all little ones were this good!" Little did she know he was just shutting down.
My paperwork says "call in 4 days for results" Hopefully there will be some good news to blog about.
Wednesday, June 11, 2008
Today was supposed to be filled with joy -- it was Zoe's last day of VPK and they had a big party for the students and parents. Tonight is a VPK graduation ceremony.
As I was leaving the house to go to her party, I received a phone call. It was our pediatrician calling on a blood test Zachary just had done on Friday. They told me I needed to come in ASAP today and talk with the Dr. We decided I would come in after therapy at 2:30 since they are right across the parking lot from one another. After that call my day went down hill. I knew it wasn't good news, if I needed to come in. Zach and I went to the party and I put a smile on my face for Zoe.
On our way home I couldn't wait any longer to know what was going on, so I called and they said come in now.
YEP bad news - his IGF-1 is low. What is was told is that he will basically need GH (growth hormone) but I need to take him to the endocrinologist. While we were there I had a chance to bring up some other problems that have been getting worse for Zachary and she has decided to give us a referral to the Genetics department as well. - She was going to do this anyway but figured now is the best time.
I was told that we simply need more brain power to help fix Zachary and that all of these specialist and her are going to need to pull together to help our little Zach.
It hurts so bad - as always, we've known there were issues going on and as happy as I should be because we are gaining some knowledge of all of them - I'm numb, I'm in a weird denial, and my body aches to its core. This is part of my Life's Struggles and progress rolled into one ball.
Tuesday, June 10, 2008
gently - and we lost him, took about a split second and the tears came, no movement. That was the end of the ball, he was mad - Ms. Jerri gave it to him and told him he could get rid of it - he took it across the room and hid it under something. Yep he really was mad ;-)
Sunday, June 8, 2008
We had a lot of fun family time....
Saturday morning Doug took care of the kids so I could veg. In the afternoon I had the pleasure of taking Zoe, while Doug stayed home with Zach (OHHH so nice) to her friend Emily's birthday party. She had a BLAST and it was great to have one on one time with her - well, at least in the car. It was good for me to, to be around my friends and have good adult convrosations! Afterwards we stopped and went shopping - even better Mommy daughter bonding time :-) Then it was home to the boys and Doug BBQed dinner, it was great. We even ended up having family movie night - it started out us watching Gremlins (oops forgot how scary it got) and ended up My Little Pony.
Sunday was BEACH day -- we all had a blast! We got there about 10am and stayed until almost 1pm. Zach is napping (has been since we got home and it is 4:15pm now)- his crib is probably all sand. Zoe has had lunch, snack, and is still full of energy.
I love watching the kids with smiles on there faces - this weekend allowed plenty of that!
Friday, June 6, 2008
Today is a somewhat relaxing day - Doug took Zoe to school for me, so it is just Zach and I until we need to pick her up. So far it has really just been me - as Zach has decided to sleep in (it is already 9am).
Zach has to have his blood work done today - my fingers are crossed for him and I'm already doing some deep breathing as it is always hard to watch him shut off.
I was looking at my calendar for the rest of this month and I can't believe how busy (as if we are ever NOT busy) we will be.... Next week is Zoe's last day of school on Wednesday - she has a party that we can all attend and then at night a graduation ceremony, and her 2 days of dance. Of course Zach has his 3 days of therapy, and Thursday is his ultrasound. Saturday is photo day for Zoe's dance academy - which stinks because it will be a whole day down the drain - pictures at 10:15, 11:00, and 1:30. The following week will be Zach's 2 other tests, 3 days of therapy, Zoe's 2 days of dance, and hopefully a nice relaxing weekend before the following week. The week of the 23rd is HELL week AKA recital week - on top of 3 days of therapy I will be lugging Zoe all over town Monday she has practice from 5:30-8:30pm, Thursday from 5:30-7pm, Friday from 5:30-9:30pm, and Saturday is the recital we have to be there at 3:30, curtain isn't until 5:00 YIKES I'm tired just typing about the rest of the month ;-)
Thursday, June 5, 2008
Zach was doing good with his sounds and instead of Ms. Kristin having to simplify his words he was doing it for her - for example she grabbed a "duck" out of the box and told Zach "This is a duck. You say duck." Zach grabbed it out of her hand and said "du" Just yesterday Ms. Kristin was the one simplifying the word.
They also played a game with different animal magnets - he would grab one and she would tell him what it was and he had to attempt to say either its name or the sound it would make before he could move on. When he was all done he had to hand them back to her and tell her again either the name or the sound - he needed much help with this! It kind of went like this; he has a pig, Ms Kristin tells him "O" (because he can't say pig or oink) he gets the "O" sound out, he gets to put it in the box, he then grabs another animal and Ms Kristin says "what is that?" he says "O" --- in other words he was stuck and his brain couldn't switch gears - she would tell him what it was or a sound and then he could do it but the next one he would hand her he would always tell her it was the animal from right before. Zach does a lot of getting stuck.
The other thing I noticed today was more issues with his motor planning. Today when our session was done Zach (as always) had to help clean up, but today he wanted to throw the toys in the box as he was trying to do this his arm would be bent like he was going to throw and it would take a couple small arm movements before his brain was allowing him to let his arm finish the movement and allow his had to release the toy. I could see the frustration on his face - it really does break my heart! I will be bring this up to Ms. Jerry-Anne this afternoon at OT.
Wednesday, June 4, 2008
So far this week has been great with therapy, really no new news to report. Zach is doing good and I believe adding the sensory diet elements are really helping him (more then I thought they would).
I tried to contact the DP's office today and found out that they have taken his uptake out of their file which means that the scheduler has created a chart and we are waiting on an appointment date. The scheduler was out of the office today so I was told to call back in the morning and more then likely we will know when Zach will be seen at that point. YEAH -- now I'm keeping my finger's crossed it won't be when he is having any of these other tests done.
Progress - it has happened in many different ways over the past 6 weeks - Life's Struggles are seeing some sunshine right now!
Tuesday, June 3, 2008
Catch up: Our weekend was fun and everyone was healthy!
Now for Monday...
Zachary had an appointment with the GI and the Nutritionist. It was a good office (we see one of the other GI's for Zoe there as well) but this was the first time I walked in and they took us right back. Zach weight in at 19lbs 11.4oz the first time and was re-weighed by the Dr after he had eaten a little and was at 20lbs 4oz. His height was 31in.
The preliminary results were in from the UGI and the conclusion says "Delayed gastric emptying due to pylorospasm. No other significant findings are noted" The Dr was rather worried about this but said "it could be a real problem or be from an infection" Only thing is all the blood test that Zach has had done lately show NO sign of an infection. Dr Evan's didn't want to discuss treatment until we know 100% if it is a problem since he said "treatment can be pretty rough and I don't want to put anymore worry on you until we know for sure".
Of course being the nut I am and having reports in hand I Googled and found info on what the UGI was indicating the problem to be - here are 2 links.....
Because we need to find out 100%, we are at "Plan A". Zach is having a series of lab tests run (blood work and urine), an ultrasound abdomen complete (6/12), a nuclear medicine emptying scan (6/18), and an upper GI endoscopy with biopsy (6/17). Dr Evan's didn't want to overwhelm us with testing -HA - sure sounds like a lot to me -- but there is a "Plan B", he wouldn't even head there with me yet.
Not only is the Dr concerned with the possibility of the delay in emptying but all of Zach's symptoms are characteristics of Celiacs Disease - so the biopsy will determine if that is playing a factor into Zach's problems as well it will also be able to detect if Zach has any other food allergies affecting him that his regular allergy tests aren't coming up with.
The Nutritionist, um, well, yeah, I found her to be a waste of time. I think she will be a wealth of information if we need to/decide to put Zach on a Gluten Free diet. BUT for now she didn't tell me anything I didn't already know. Even she found it hard to give me ideas because of how sever Zach's milk allergy is (we carry an epi) and most things to help promote weight gain have some form of milk in them. However I did find out that he should be getting 1075 calories a day (which if he doesn't - it is pretty darn close) and 17 grams of protein (which he gets more then that) She was also very shocked at the amount of knowledge I had regarding everything that Zachary is going threw and how this whole time I've been doing the right thing and he just isn't growing.
I'm ending this on --- "WHY is he so small?" both of the issues the GI is suspecting at this point would cause absorption issues which will give us our answers. For right now I know I'm feeding him what he needs and he is still failure to thrive. He will get better - this GI is on it!!!!!!