Warm-Up

Last night was Zoe's second dress rehearsal (3rd practice this week), the night before was pre-dancers only - Zoe is a pre-dancer but she is also in Jazz 1 and even though she is 5 the Jazz 1 kids are considered to be part of the big kids. Oh, the Joy of sitting through 3 practices - last night was 4 hours long. My best friend and her little boy came to watch Zoe since she will not be able to get to the recital today.

Here are pictures Kori took from Zoe's warm up. Zoe did great, kept up with the big girls and everything!

Who Said Friday Is A Good Day?

I didn't even really need to say anything to Ms. Jerry when we got to OT - she just knew.....

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)

Week 9 Is Almost Over

What a week it has been....

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.....

Week 9

It is so hard to believe that two months of therapy have flown by!

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....

Puzzle Pieces....

....the more you put together the quicker the puzzle should be solved......not in our case.........

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.....Already?!?!

This weekend really flew by.....

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!

TGIF: Done with Week 8 of Therapy

WOW the week has gone by so very fast, I didn't even get on here.

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!