Friday, May 30, 2008
Today was Zachary's UGI. I couldn't feed him from midnight until after the test was done so this of course means the child had nothing in his tummy since dinner and was starved. I was amazed at how well he did on his ride to the hospital. He started grunting, whining, crying for his cup, I calmly explained to him why he couldn't have it and that they would feed him (YUCK barium) at the hospital. Zach immediately calmed down -- Now if this was happening even last month he wouldn't have understood my words!!! Zach never fails to amaze me from day to day!
While at the hospital Zach was a doll, just sitting on my lap, so very well behaved. We got called up to do our paper work and them man recognized us from last week. He was so kind to Zach (and myself), he flashed Zach a smile and Zach responded to him with a quick smile, little giggle, and then a turn of the head. We had to take a seat and wait to be called in. While waiting a little girl named Emma came up to Zach - Zach does not interact with children (besides his sister), but I was very friendly to her and talking to him - he allowed me to put him on the ground standing. He wasn't able to go by her or even really look at her, but just standing on the ground, back pushed hard up against my legs, with her nearby was such a huge step for him. Again Zach never fails to amaze me day to day!
When we went back for the test - Zach was fine. We got in the room, changed him into his gown, and had to sit him on the table - when the Dr came in we had to lay him down and the machine was pulled overhead so it was almost tent like and he had to lay there, drink when told to do so (which meant us taking the cup from him when he had to stop), the tech and I had to roll him from side to side when told to do so.
He shut down as soon as the machine was overhead- didn't cry, didn't make a single sound - just wasn't there. He allowed us to do everything for him without a peep or even a glance for help, his eyes were vacant, Zachary was gone once again from me. As much as it hurts to see your child leave their own body at a time like today you have to find the golden light. Better a quiet, non-flipping out child then the opposite. It doesn't hurt so bad when you know Zach was using his SPD as a coping mechanism and we were able to finish the whole test in under an hour.
We will have the answers from this test on Monday when we head to Zach's first appointment with the GI.
Thursday, May 29, 2008
ST went okay today.
I had to wake Zach from his nap to leave and he wasn't very happy. The best thing was the therapy place was soooooo very quiet. I thought "Great! Zach is going to have a good session!" Nope he was quiet for the first 5-10 minutes, not even a grunt out of him. He was hard to work with today but by the end was having fun.
I had found a water gun and the game was if Zach could say "wa-wa" I could squirt him. He knows the sign but never attempts the sound - today he had to or no fun ;-) YEAH Zachary - he did it over and over until we realized he was stuck on it. BUT I was doing the happy dance - new sound!!!!!! Not that we have heard the "na" again, but "wa-wa" will be much easier to incorporate into daily life the "na". Now I have something I can make him say all the time because "wa-wa" is one of the only things he likes to drink right now.
OT went rather well today. Ms. Jerry-Anne did a lot of compression work with him today , which he seemed to tolerate. He did some climbing, and sliding, some bouncing on a ball, rolling over a ball to use his upper arms (since they are very weak), some rocking - he started out fine but that didn't last very long, and some making noise with instruments - he seemed fine with this as long as he was the one making the noise. She had the therapeutic listening program on as we walked into the room - I swear he is doing so well with the music - I can't wait to get my hands on a copy so I start using it as part of his sensory diet at home.
Now, to prepare mentally for tomorrow - we need to be at the hospital by 9am and I have no idea how long we will be there but I do know I can't give Zach any food or drink until we are done with his UGI. Tomorrow will be one more challenging day to add to our mix.
Wednesday, May 28, 2008
Just as the pediatrician and Doug and I thought, Zach's mouth is going to be too small for all of his adult teeth. He has delayed development in teeth growth, but is cutting his canines now (delayed but they are coming, so good).
Zach has an extra tooth. The dentist said for now it looks as if he will only have one extra tooth (on the left side) but that Zach may develop another one on the right side as well. What do we do with it, well, for now we do nothing with it - in fact kind of sounds as if it may be a good thing it is there as it is opening up more space for the adult teeth to come into.
He also said Zach's mouth with his baby teeth is going to be "very cramped". He said by the time Zach is 3 they will be able to do an x-ray and see what the story will be with his adult teeth - typically he said you will also have an extra adult tooth or be missing one. For now we keep an eye on it every 6 months.
He also said more then likely Zach with be to an orthodontist by the time he is 8 for some teeth extracting and then by the time he is 10 - 11 he will be having even more work done on him with retainers (yes my son already has a bad overbite) and braces.
I know this is all so far down the line but jeesh can't Zachary ever catch a break?!?!?!
I've saved the best news for last....
Zach did really well with the cleaning - she brushed his teeth with their cleaner, scraped (but nothing came off), flossed, and put his first fluoride treatment on his teeth. He didn't complain once just said "mmmmm" to the taste. He even allowed the dentist in his mouth - well with a couple moments of a tightly clenched mouth but over all he did really well.
I want everyone to fully understand how different Zach is and that his SPD doesn't just kind-of affect him, it stops his life on a daily basis. At this point it is very, very hard to do things with him you would normally find relatively easy to do with other kids....
How very careful you have to be when you touch him - that if you touch him too light he gets scared, and pushes your hand away - almost as if he hates your touch, so you have to touch with a lot of pressure, but not too much or he cries at that too. This makes you feel so very rejected.
You can't be overly loud, or he shuts down, yet if it is too quiet there are times he hates that as well.
You can't just look at him, because if you do too much or in the wrong way he screams, puts his head down and leaves his own body. Forget about trying to get eye contact for longer then what Zach wants to do (which is normally none at all anyway) - you'll end up with out him for close to 5+ minutes.
A trip to the store isn't easy, or the pool, or the beach, or a doctors appointment, or even just the car ride. You have to judge when to go, and how to go about going. You have to be one step ahead of yourself or the trip will be an utter disaster. We've actually had to leave McDonald's because it over stimulated him and he wouldn't eat, he'd only look at the floor - the only hope of him eating was to leave. Yet the same McDonald's a different time he was fine.
If Zachary is put in the same situation from week to week and it is predictable (like going to the dance academy) he is fine, but change just one element and he won't be himself - such as the time one of his little friends wasn't there and he would only sit in my lap looking at the floor - no clue of what was around him, or the time all the Mom's had to go in the studio to help the girls change into their costumes - he walked in fine then realized all the noise, all of the commotion, and stopped - just stopped - stood in the middle of the room not a sound came out of him - he wouldn't move - he looked at the floor, until someone he trusted picked him up, then - he held her tight only looking at the floor head on her shoulder for the next 20 minutes. (this is the characteristics we were seeing when we thought he was having absence seizures)Zachary can touch something once and be okay with it but the next time he can have a total melt down and you just never know when it will happen.
Monday during Zach's nap Zoe had taken the pillows off of the couch and made a bridge with them around the family room - when he woke up he was happy - that only lasted until he got into the family room and didn't understand what was going on - he threw himself on the floor and cried, when I picked him up he only looked at the ground - crying stopped but Zach wasn't there for over 10 minutes he could only be held tightly.
I don't think she realizes how much effort it takes on mine, Doug's, and Zoe's behalf of dealing with all of this, trying to catch things before they happen so he doesn't get lost, or have a meltdown, or totally disappear from us at any given moment. How hard all of this is to watch your baby go threw and not be able to help fast enough or helping but only making things worse for him.
This list can go on and on but I'll stop as I really need to get my day under way.
Thanks Steph - you made this possible to let me get this all out in the open!!! Love Ya!!!!
Tuesday, May 27, 2008
Today went exceptionally well.....
In OT I received a bunch of paper work to read over about starting Zachary's sensory diet, more information about his brushing and compressions, and some information regarding the therapeutic listening program we are going to try. Zachary had a very fun time, playing with balls, and walking up a ramp, playing with play-doh - he didn't mind touching it until we tried to rub it in his palms to make a ball with it - we don't know if it was our touch or the feeling of the play-doh on his palms that he didn't like. Ms. Jerry-Anne also tried to make Zach go into a fabric tunnel - but Zach wanted nothing to do with it, so instead she and I had Zach sit on top of it and we made a swing out of it (Zach was wrapped very tightly almost as if he were back in the womb). Zach did okay with the swinging until we made him bump on the ground and then he was done. He also didn't like sitting on a ball and making it genitally bump up and down - he stayed put but all his focus went down to the ground, I couldn't get him to look anywhere. Zachary was also in OCD mode today ---- he noticed every teeny, tiny piece of ick that was on the floor and would stop to pick it up. He handed something to Ms. Jerry-Anne and she put it in her pocket (telling him she was doing so) so the next thing he picked up, he tried with all his might to put it in his own pocket (this was 10 minutes after she had done it first) What a wonderful memory he has - this carried into ST where in that room he did the same thing.
ST went by way too fast. He had a little bit of a hard time adjusting at first and was very quiet. Ms. Kristin had a box of beans and hid some cards in it for Zach to find. He didn't mind playing with the beans until they were sticking to his hands. He didn't really do well with the game and gave up very easy, but once Ms. Kristin was making him clean up the game went much better - one of the cards was a horse (he can't remotely say horse) but Ms. Kristin said "the horse says nay" Zach was able to get out a "na" (first time EVER YEAH ZACH!!!!!) but quickly became stuck on "na" and everything was "na" after that. It really hurts to watch him when he is stuck - but the good thing was he was stuck on a new sound! I'm so very proud of all of his hard work!!!! When we got into the car that changed and he was stuck on "be" for the next 2 hours.
We came home, I tried to give him lunch but he only had a couple bites. He was so tired from today, it still amazes me at how much all this play is really, very, hard work. Right now my baby boy is sleeping and I hope he is dreaming about all the progress he made today - with a big smile on his face!
Doug has been really sick. Our Doctor is out of town and he is feeling bad enough where he actually took himself to urgent care. I'm thinking he has strep, since Zoe had it a couple weeks ago. I hope he heals fast, since his Mom and Dad are coming into town tomorrow. It will be a nice break to go out by ourselves - also it is our anniversary this coming weekend and I'd kill for a nice, romantic date!
Today is the beginning of a crazy week....
Zoe to and from school
Zach an hour and a half of therapy
Me cleaning, cleaning, cleaning.
Zoe to school (hoping Doug gets there on time to pick her up)
In-law's into town
Zoe to and from school
Zach therapy morning
Zach therapy afternoon
Hoping Doug gets Zoe to and from school
While I have Zach at the hospital for his UGI
Okay, so seeing it all typed out really doesn't seem so bad -just a little more hectic then normal -added to it my in-laws here and a test for Zach thrown in the mix of things, and me needing to count on others to help out - considering I've been a bit of a control freak lately, oh yeah and the fact that Doug isn't healthy right now. Hopefully Saturday and Sunday will shape up to be nice days where we can all just relax a little.
Saturday, May 24, 2008
Yesterday was Friday May 23, 2008 - Zoe had no school, Zach had no therapy so our day was spent together trying to have as much fun as we could. Zoe was ecstatic to be out of school and Zach was having an exceptionally well day - until the evening, when a fever hit.
After Zach's last nap I noticed he was hot, it wasn't until Doug came home and said "boy, he feels really hot, have you taken his temp?" before I realized it was worse then I thought. I took his temperature and it was up to 104.5. Instead of going out to dinner like we normally would on a Friday night we had to stay home and watch Zach.
Thank goodness the morning came and we had no vomit in the crib. Zach did wake up still with another 104.0 temperature. He had only woke once in the night and his fever wasn't so bad at 102.8.
Nap time came too soon at 8:30 in the morning (he woke at 7:30am). Zach slept until 1:45pm and woke with vomit - it has returned :-( I hope nap time was the only incident we have to deal with this week.
So much for the fun long weekend we had planned with some friends. I guess we will just have to try for another one. I hope we will have another good weekend sometime really soon!
I've also started to read my new book -- The Child With Special Need by Dr Stanley Greenspan (http://www.amazon.com/Child-Special-Needs-Encouraging-Intellectual/dp/0201407264) So far it is a wonderful, easy to read book, and is bring so much to light with Zachary's issues!
Thursday, May 22, 2008
Today Zach had ST at 10:30am as we walked in the door the little lobby was filled with people. The noise level was so high he immediately shut down. Ms. Marla couldn't get a smile or a wave out of him. Ms. Kristin took him back within 2 minutes of being around the noise. Even though he had his own little room to play in the sound still comes threw the walls. Today was not his day for ST. He was stuck on only "D" sounds and had a very hard time getting any other sounds out. He redirected even more then normal and just seemed so very frustrated.
Zach also had OT at 2:30pm. It was really nice to see Ms. Jerry-Anne back! This time it was much quieter at the center, so Zach didn't have too bad of a time making the transition. First thing he was put in a rubber tire swing that has a board on the bottom of it and some toys on the inside - he seems to tolerate this really well because of the small space. As he was enjoying his ride Jerry-Anne and I talked about his M-CHAT results - she wasn't sure it was fair to give him the test seeing how sever his SPD really is - although 90% of children with Autism do have SPD. She showed me how a lot of the answers that were flags also played into his SPD. He did have some that weren't because of his SPD and she was very happy to hear we will be seeing Dr. Childers (DP) - who hopefully can lead us in a better direction with all that is going on. Jerry-Anne will be giving me more information on Zach's sensory diet next week. For now I'm just to keep doing the brushing, and compressions. She did add on more compressions to be done, more so then every 2 hours - every 30 minutes if need be. She also gave me some more books to read and a link to the therapeutic listening Zach has been doing with her. Hopefully I will be able to borrow her CD's.
Here is that information - if anyone is interested....
Wednesday, May 21, 2008
I'm having such a good morning...Zachary didn't vomit for the second day in a row - YIPPEE to no morning laundry ;-) I spoke with the pediatrician yesterday and she thinks the extra fluids that he received could have helped with some levels that may have been off for Zachary and put him back on track, hence no more vomit. We will see, I want to give it a couple days and keep my fingers crossed the IV fluids weren't just some temporary fix.
I didn't have time yesterday to update about ST.... it went really well. As Ms. Kristin said "Zach is really wound up" He was bouncing off the walls hyper. I think it was the extra fluids. He redirected a TON, even before things were getting too hard. So Ms. Kristin and Zach went under a table - I have never seen him focus for so long. She told me a lot of kids with sensory issues are better in smaller spaces. This really proved true for Zach yesterday! They also played a game called "Farm Families" Zach loved it - too bad I can't find it anywhere, it is an old game. It has little figures of different farm animals and you place them on a stand and the stand sings a little song and the animal makes their sound. Zachary thought it was funny.
We have ST today as well - I sure hope it goes as good as yesterday!
ETA: ST went REALLY well today.. Zach worked on his "B" sounds and even worked on getting some "P" sounds out too. We found out that this child LOVES bubble (even if he can't tell us) He stood shaking with excitement. And thanks to Kori now we've even added a new sign to his vocabulary -- YEP "Bubbles"
Tuesday, May 20, 2008
Zachary was doing fine until we came home from dance -he ended up having 6 diarrhea diapers in about 45 minutes. I had called our Dr because she said to if we had more diarrhea or vomiting. She told me take him to the ER so that we can get him admitted. The hopes were that he would get admitted and we could have a GI consult in the hospital and get the ball rolling on some more tests that need to be done. I told them EVERY little thing my Dr told me to tell them - including how she wanted to see him get admitted and...
It didn't happen......The ER Dr we saw was plain and simple, an idiot! I didn't like him, nor the level of care we got from the nurses. I can go on and on about both but I won't - plain and simple we were sent home at midnight.
Onto this morning...I'm waiting on a call back from Zach's pediatrician to find out more on the x-ray from yesterday afternoon and the x-rays they ran last night. Also to hear about more of the blood tests, stool tests (fingers crossed they are back), and to find out when the upper GI will take place.
I also UPS Zach's paperwork overnight to the DP. Tracking it shows it is on time for them to receive today. I can't wait until they get it and we find out our appointment time.
As for today - OT was canceled because Ms. Jerry-Anne is home sick so all we will have is ST today.
Monday, May 19, 2008
Why is it good or bad the weekends always go by too quickly?
We woke up to more vomit from Zach. This is the 11th - yes, the 11th day in a row of vomit. He is also starting to have much more diarrhea - sometimes with the vomit and other times just on its own.
I put him on the scale which read 18lbs - I only put him on it once and it takes 3-4 readings to get the right weight, with the first always being the highest of the times. I know, I know I really need a new scale. I didn't want to force Zach on it again (he hates it), and I didn't want to see anything less.
I called our Doctor and told her what is happening. I'm taking him in for a weight check on their scale and then straight to the hospital for an abdominal x-ray. She is getting worried that there may be some type of obstruction happening. AND of course it will be a day or two before we get the test back.
I also called the GI and asked to be put on a list in case someone cancels - maybe we can get in sooner then June 2nd. My fingers are crossed. I know his appointment isn't very far away, but what if the vomiting doesn't stop - that would be 14 more days. TOO long in this situation - if you ask me.
AGAIN with the waiting.... I hate waiting!
Sunday, May 18, 2008
Besides the vomit all over me on Friday night from little man - the weekend didn't turn out 1/2 bad!
Saturday was spent just relaxing at home and having an early dinner with some friends. When I went to the mailbox in the afternoon, I received the BEST news I've had in a long time; a giant envelope from the Developmental Pediatrician. This is such good news because it means the doctor wants to see Zach. In the envelope was a packet containing 17 pages of medical information that needed to be filled out and sent back - the questions were amazing - things one would never think of keeping track of - by the time we were done there was so much detail of Zach's life written down I felt like I had a better knowledge of my own son. Once they receive the paperwork back, the doctor then goes over the information and I will be notified with an appointment date and time. Sure looks as if we won't have to wait that full 12 months before he sees Zachary! I'm so very happy!!! Yes, I'm literally doing the happy dance at this point ;-)
Sunday was spent relaxing in the morning, filling out all that paper work this afternoon (which took 3+ hours to do), and then heading to the beach for a couple hours. It was a great day for the beach - we went at low tide, it gave Zach the opportunity to play in the ocean and feel somewhat comfortable. Doug watched the kids, so that I could try to unwind from all the work we did (sunbathing is like being in heaven for me, with the gentle rolling sounds of the waves and beating hot sun) - it is amazing to me how much simple paperwork can add so much stress to your day - the knowing things aren't right and seeing it on paper brings a whole new element to the situation - questions that were left unanswered because Zach isn't doing them, yet, at his age should be, breaks my heart every time and seeing it in black and white only makes it worse. I toyed with bringing my camera with us to the beach (where is Kori when I need her ;-) and was so disappointed I didn't - right when we got there a family had just caught a shark (YIKES!) It was just a little one, well, when I say little it was still longer then Zach. Anyways we still had fun and yes we still went in the water - just not as far as we would normally.
This weekend really was, a well deserved, wonderful weekend!
Friday, May 16, 2008
Zoe had her 6 month check up with her rheumatologist today. It went really well. Zoe no longer needs to be on her methotrexate, but still needs to be monitored. We will go back on Halloween for another visit and hopefully after that it will only be one visit a year for the next four years. - Good thing because Gainesville is such a long drive from here. This is only as long as she has no flare ups. Her range of motion is completely back - hasn't been since she was an infant. YIPPEE Zoe!!!!!
Zach, well, we had another morning of needing to do laundry -YUP he vomited again. I have no clue what is going on - can't wait to see the GI June 2nd. After the ride to Gainesville we stopped at McDonald's where Zach went into complete sensory overdrive. We were trying to eat there HA ended up coming home so he could eat something.
I'm happy it is Friday - we have a fun weekend planned - hockey tonight Go Wings!!! Gym in the morning tomorrow and a fun afternoon downtown St Augustine with some friends. Sunday, maybe if the weekend goes well we will get to spend the day at the beach YEAH I love the beach!!!
Thursday, May 15, 2008
As soon as we walked in the door a little boy who was in a session started screaming and crying. Zach HATES this -- he doesn't know what to do. When it gets too bad Zach turns off, just about completely. Today ended up Zach sitting in my lap stiff as a board. I asked - "do you want to play?" and he would slowly nod his head, then I gently pushed him off my lap so he was standing (the other little boy is still screaming) Zach pushes back on my legs as hard as he can. Zach wouldn't go play, he just stood there, staring at the ground, with a look on his face as if he were gone.
I'm sitting there a bundle of nerves - I don't know why. Two other mothers were waiting for the children - the one was the mother of the screaming boy. I could feel my legs start to bounce the way they always do when I'm upset. Again, I don't know why...was it because these mom's could see my child being different, or was it because I just wanted to make the screaming boy stop - so Zach would be okay? Most likely a combination of both. These other mothers that were there are also dealing with the same things I am, I know this (because I asked), and I know this is the one place we can go and feel like part of our normal world - where almost all of the children are special needs and their quirks are a welcomed quality.
A moment later Ms. Kristin walks out with 2 other therapists and the little boy who Zachary heard screaming, ahead of them. Normally Zach is all about seeing her, not today! Zach will normally walk right behind her grinning from ear to ear - not today! Today, he cried. I tried to take his hand, he wouldn't take it. Ms Kristin picked him up with a friendly smile, he wouldn't look at her, he looked over her shoulder to me and then to the ground (I kept a smile on my face - as much as I wanted to cry seeing my son this way) he cried until his face was turning blue and sound wasn't coming out. As we got back to our quiet room he took a minute and a hug from me to get himself back together. Then it was all play. The only difference was -today Zach wanted in my lap almost the whole time. He did well considering the start we had to today's session - nothing new to really put in here.
One day this blog will be filled with a ton of NEW things Zachary did! I know it will!
Wednesday, May 14, 2008
Zach woke up with vomit in his crib...again. I have no clue what is going on with him! He doesn't seem to have a virus or anything. I can't wait until we see the GI - hopefully he will be able to help us with something. Besides the vomit - Zachary was all out of sorts this morning. He was smiling when I got him from his crib - but that quickly changed. I did his brushing and compressions (in hopes his behavior would get better) and he didn't want anything to do with it! The screams were insane. After that was all said and done Zach was still screaming. I'm so tired of the screams! I don't know what he wants, he can't tell me if he hurts. When I ask questions and he is like that - I get no nods or shakes of the head - just more and more, louder and louder screams. This morning the screams lasted for well over 45 minutes.
I had to take the kids to the doctor - since Zoe's fever spiked again last night to 104.8. So far, so good this morning - she has kept the fever at 100.8. If it goes back up (over 101) I am to take her to the hospital for a chest x-ray and some blood tests. She has a cough that has started up but the doctor said she sounded clear for now. I'm to start giving Zoe her inhaler 3 times a day until we get rid of the cough. No meds for now - only if the blood tests show something. Fingers crossed we won't even need to get them done. Today is the first day since Saturday Zoe is off the couch and trying to play. I took Zach just to get looked over because of the vomiting. He looks just fine. The doctor is running some stool tests on him - since she thinks the GI would benefit from having them in his hands when we get there. HUM this whole waking up covered really has me baffled.....
Tuesday, May 13, 2008
Today went rather well. Zach was very excited to see Ms. Kristin. We all went back into the room and played. Zach had a really good day. He once again tried as hard as he could to get some sounds out. He is following directions so well now it is almost unbelievable considering just a couple weeks ago he really had not much of an understanding. I can't wait until the day where he won't try to redirect everyone when something gets too hard -- he gives up very easy. Kristin thinks his receptive speech is just up to par with his age. This is great news - since at the beginning it was at 9-12 month range. I believe this has all to do with how bad his hearing was. Of course his expressive speech is still at 6-9 month age range. I asked Kristin again what symptoms he had that would lead her to believe he has apraxia of speech and they are as follows (I couldn't remember her exact words so I found these to copy and paste - but they are what she said) We also talked a little about the probability that he also may have an oral apraxia too.
Oral apraxia is an inability to make voluntary, non-speech oral movements. A person with this problem would be unable to stick out his tongue if told to do so, but could perform this action without struggle if given an icecream bar to eat. As the auditory comprehension sections of some aphasia batteries include commands involving oral structures like "lick your lips," oral apraxia may also be mistaken for aphasia.
- Limited or little babbling as an infant (void of many consonants). First words may not appear at all, pointing and “grunting” may be all that is heard.
- The child is able to open and close mouth, lick lips, protrude, retract and lateralize tongue while eating, but not when directed to do so.
- Oral scanning or groping may occur with attempts at speaking.
- Lack of a significant consonant repertoire: child may only use / b , m , p , t , d , h /. (he only uses M, B, and D sounds -- mainly B)
- Receptive language (comprehension) appears to be better than attempts at expressive language (verbal output).
- Verbal perseveration: getting “stuck” on a previously uttered word, or bringing oral motor elements from a previous word into the next word uttered.
Although he is 4 months away from being 2 - so he still has time to prove her wrong he already does the following....
- First word approximations occurring beyond the age of 18 months, without developing into understandable simple vocabulary words by age 2.
- Continuous grunting and pointing beyond age 2.
- One syllable or word is favored and used to convey all or many words beyond age 2. (Zachary uses B for theses last two points)
- A word (may be a real word or a nonsensical utterance) is used to convey other words beyond age 2.
The good news...While Zach and I were at therapy our EI coordinator called and approved Zach for his 3rd day of ST. In a couple weeks it will be upped to 4 days a week. This is GREAT news -- the more help we have now the better for Zachary's progress in the future.
Zach will go back to OT on Thursday.
Now, on to the rest......Zoe is still sick, sick, sick! She has been complaining about her tummy but everything is staying down. She still has a fever - so it looks like we will be back at the doctor tomorrow for her. Doug has also caught the bug and spent the day home again - being taken care of by me - my how the tables turn ;-)
Monday, May 12, 2008
What a day today was......
Zach woke up just fine.....laid down for a 5 hour nap and woke up with diarrhea and no fever. I decided since he has been sick to weigh him - He weighed in at a whole 17.4 lbs, that is down 2 lbs in a couple of days. If he keeps this up he is going to disappear. I have friends with 4 month old babies that weigh more then Zachary.
Zoe has had a fever all day long. She has only vomited twice. I took her to the doctor to make sure the strep throat was better. It is all gone YIPPEE but another virus has taken its place. She is still complaining her tummy hurts and hasn't eaten anything. I'm trying my hardest to keep her hydrated. She is also down 2 lbs in a couple of days, but I'm not worried aboiut that as much. Her sassy-ness is coming back so I think this may be the end of what ever is going on.
I was sick most of the day. Doug stayed home from work today so that I was able to sleep. He was on kid duty all day long and did a wonderful job taking care of 3 sickies ;-)
Tomorrow will be interesting, as Doug will be back at work and I'm going to have to juggle the kids by myself. Zoe has a sick note until Wednesday so she will be home. Zach has ST in the afternoon - I hope he is well enough to make it there.
Sunday, May 11, 2008
Last night ended WONDERFUL.....The kids gave me my presents early so I could enjoy them. Also because Doug really needs to learn you can't trust a 5 year-old with a secret. I got the cutest, most comfortable pair of Victoria's Secret blue jammies, and my favorite scented hand soaps from Bath and Body Works. After the kids were asleep Doug and I spent the night having a couple of drinks, eating some snacks, and playing Wii. I was supposed to enjoy my jammies (according to Zoe) by wearing them to bed and lounging all day on Mother's Day. HAHAHA like that is happening.......
Morning came with a BANG at 1:00 am........Zoe walking into our room crying that she had "puked all over". Doug and I both sprang out of bed to help her......YEP ALL OVER, her bed was covered, I mean covered in vomit. I took Zoe and cleaned her up, while Doug had the fun task of cleaning the bed. I started the first load of laundry right then and there. Zoe slept on the couch from there out with a bucket at her side. She woke at 2:30, 3:30, and again at 4:45 vomiting each and every time. She was also running a fever of 104 and shaking.
Zach also woke up with vomit all over his crib - but no fever. This is his 3rd night waking in a row with vomit and 4th time the has vomited in 3 days. I can't understand why every time he is only vomiting when he is sleeping.
Things could have been worse - I'm so thankful to have Doug around, he helped without a complaint - I know many Father's who would make Mommy deal with it all. That is the best Mother's Day gift I could have gotten - his help! Not that he never helps - he is the best Daddy in the world! (sometimes I just don't see it like I should)
What a Mother's Day -- is there such thing as a re-do for Mother's Day? If so I really need to take one ;-)
Saturday, May 10, 2008
Last night Zach laid down for a nap and when he woke up there was vomit everywhere. I thought just maybe, that he had gotten into some pudding Zoe had eaten and that he had a reaction. As he had no fever or anything else going on. Well......I must have been wrong because this morning when he woke up --- vomit all over....again! This poor kid!!! I swear he can't catch a break! Now Mommy has to put him on the scale - which he hates - to make sure he isn't loosing weight again. Zach can't afford to loose any weight! I'm a wreck!
To top it all off - Zach has been getting worse with the SPD. He just isn't there like he was even last week he seemed better - he has been all out of sorts. He won't hardly go to Doug and if he is with me he won't look at me. With Zoe, forget it, every little thing she does is making him scream, look away, and not want to be around her. He is fighting me with his brushing, and compressions like you wouldn't believe! I have to admit I'm really bad at fighting back with him trying to get it done, I do what I can. He seems to be disappearing from us.
OH well, one of these weekends will be better ;-)
Friday, May 9, 2008
Zach's x-ray came back with the bone age being on target for his age. The Doctor did say that she still needed to look at the blood test and put those against the x-ray. BUT I'll take this little bit of good news for now.
Hopefully this is the beginning of a better weekend then the last!
The kids are finally (knock on wood) both feeling 100%. This weekend is going to be spent at the gym, pool, and beach! AHHHHHH I love living in FL - nothing beats the sun and HOT weather in May! The weekend is looking good - now if it only plays out that way ;-)
I've gotten all my phone calls in - well, I'm waiting on hearing from the pediatrician about the x-ray, but other then that my day is done and it is not even 2pm yet. Zach is all set for his appointment with the pediatric dentist, pediatric GI and the nutritionist. All to be done with-in the next couple of weeks.
TGIF Everyone - If I hear anymore news I'll be back to post about it......
Thursday, May 8, 2008
Today was a decent day.....Zach saw Ms Kristin (SLP) and was worked so very hard. He had a very time with therapy today. It started out by us waking into the lobby filled with people he had never seen and very loud - he smiled at Marla but the other lady behind the window couldn't get a smile - even with how hard she tried. He clung so very hard to me waiting in that lobby.
We went back with Ms. Kristin and right when we were settling down to get to work a knock was heard at the door - An OT student from UF wanted to observe. What she observed was SPD coming out in full force as Zach wouldn't do anything - mainly stand and look at the floor - he would look at her for a second then back to the ground his eyes would go. She was finally called into another room and Zach came out of his shell a little bit. I noticed a lot of Zach redirecting Kristin as things were getting harder for him. I'm not even so sure we really got anything out of him today. He didn't babble until it was time to leave and even then it wasn't much.
I rushed to go get Zoe and got there 10 minutes late -- not a good Mommy! When I saw the look on her face, my heart broke - she wasn't happy being the last kid in the room (this is the first time this has happened)
From there it was over to the lab. My little man had to have a bag put on his penis (did not like this) and then had to have 5 vials of blood drawn. Three women had to do it but I think we would have been fine with two. One lady was trying to distract him by singing songs - it was really getting on my nerves, the other was switching out the vials, and the last was holding the needle. First poke --- not a movement, not a peep out of him, he wasn't even in his own skin, just quiet, deep stares at the ground. His blood flow stopped by the 3rd vial so he had to be poked in the other arm - this time Zach was there, he wasn't happy but only cried for a second, allowed them to get the rest of what they needed. When we were done, I checked the bag and sure enough the poking scared the pee-pee right out of him. After I got the bag off of him, we were on our way - with a wave good-bye to everyone we passed.
Zach doesn't have OT until next Thursday since Jerry-Anne is on vacation. I guess that gives us a tad of our own break.
Busy, Busy, Busy....glad there are no more appointments for the week. Just lots of phone calls to be made.
Wednesday, May 7, 2008
Referral to Developmental Pediatrician. I guess this is the only one in our area - he has a 12 month wait -- YEP you read that right 12 month wait YIKES. I talked to his receptionist and she said they have a meeting every Thursday to go over possible new patients. He likes to take the younger ones first and considering all the information I was able to give her she thinks Zachary will get in rather fast 2 - 3 months, if not sooner. I don't know if it is a good or bad thing that he can get in that fast - good, because he needs to be seen - bad, because I'm faced with more of a reality with his issues.
Referral to GI: In her opinion this should have been done long ago.
Referral to Nutritionist: To find out how much he is eating and what he could eat to help with weight gain.
Referral to Geneticist: She thinks there may be an underlying syndrome that we don't know about - Fragile X was brought up but she said it could be something else.
Referral to Dentist - she thinks his mouth is too small for all of his teeth. At 24 months a child should have 20 teeth - at almost 20 months Zach only has 10 and some of those have stopped growing, also his mouth doesn't look like it is going to be big enough to fit his teeth.
TONS I mean TONS of blood work to be drawn
An x-ray of his hand for bone age - she predicts it is going to be around 12 months, but we need to make sure.
She was very supportive of therapy. She is concerned that he has autistic traits. She says there is no doubt he is FTT (failure to thrive) and should have been taken more seriously before. She had a very hard time getting his reflexes to react and was worried about his muscle tone.
Today on my scale at home he weighed 19.6lbs on their scale he was 20.6lbs - he was also only 30 inches in height. When she plotted his stats on the chart he wasn't even on it -- NO SURPRISE there! Heck my son still fits into 6 month size clothing and he is just shy of 20 months old.
Overall she was great - she listened to everything I had to say. She had her own questions. I could tell she was genuinely concerned for Zachary's well being.
So there it is, all laid out - I should have done this months ago - but hell, you put your trust in the Doctors hands. I think our old Doctor is wonderful - she treated Zoe for over 4 years and was great with her -- but give her a special child and I think all goes out the door. I'm mad at myself for waiting to find a new Doctor. I think part of me wanted so bad for everything to be normal or okay and to change Doctors was admitting something wasn't normal or okay. We are on a good track now - now we need to really face these situations head on.
Tuesday, May 6, 2008
Poor little Zach didn't do so good with OT today - he wanted me so I had to leave the room then he did better. He had his brushing and compressions then seemed to settle right in for a little while. It all went down hill when he started crying and kept reaching for me. Ms. Jerry-Anne couldn't calm him so she deiced it would be best for her to take a walk with him and us to wait in the lobby. I was glad she got to see Zach like that because it is how he behaves most of the time at home.
I didn't get to go in for ST today because he just switched from one to the other without me knowing. Ms. Kristin said he did really good today - he got out a new sound by imitating her - H - he liked trying to fog up the mirror. She said she really pushed him and it was hard for him because he likes to redirect since his attention is so poor but she would get him right back on track. She said he is one little tough guy.
I think he did well with how long therapy was - he went right down for a nap as soon as we got home. Both therapists said he was worked very hard today with each of them. - It showed with how tired he was - Zach napped from about 1:40pm until 5:30ish. Not that is naps are ever short but I was stunned.
Both Jerry-Anne and Kristin were happy that I switched pediatricians and think I'm doing the right thing. It was really hard getting rid of the only pediatrician we've had since moving to Florida.
The OT is concerned with Autism so she had me fill out the M-CHAT, but she didn't have time to score it - I already know since I took it when Molly shared it with BBC. I'm glad to have found this place - I feel as if they are really taking things the right directions with Zach.
I'm hoping on Thursday I will have both the ST and OT evaluations and reports in my hand. I got to look at the OT report, but she had made a mistake and wanted to clear it up before giving me a copy. It had a ton of information that I would like to learn about on it, along with a ton of short term and long term goals.
Well.....that was day one of week two - now for Thursday to get here.......
Monday, May 5, 2008
I loved her -- she was so very friendly. Her office was great - extremely clean and well organized, also decorated very kid friendly with beautiful hand painted murals on the walls.
I brought the kids with me and first thing she was VERY concerned with Zach's size. I told her how small he was (19.2 lbs on my scale last night) and she said "we need specialists involved NOW!!!!"
She was great with him going to his therapies and had nothing but praise to speak of his therapy place.
You could tell she really LOVES what she is doing with children.
My favorite thing she said was "I believe that parents know what is wrong with their children - I am here to help these children get to where they need to be to live healthy lives. I want the parents to be full participants in their children's well being" I think she is going to be a GREAT fit for our kids and if not I'll find someone else.
She wanted the kids to be seen ASAP so we go in on Wednesday morning for Zach and afternoon for Zoe so I don't have to have Zoe with us as we are going over everything for Zach. She said she wants to see him so we can "move, and move fast on his issues - he is at a very crucial age for getting him help that should have been here sooner"
I really liked her - she brought happy tears to my eyes. Maybe we have found someone who is willing to be "very, proactive" (as my neurologist says we need) with our dear little Zachary!
Sunday, May 4, 2008
Doug and Zoe just left for a nice trip to the beach, while I'm stuck at home with a very sick little boy.
Zach woke up this morning with having a fever of 103.8. We took him to the Dr for a sick visit and she said his throat is full of ulcers. She tested him for strep because of Zoe having it but it came back negative. She said he will be sick for about 5 days and he is highly contagious. All we can do is help him with Motrin every 6 hours to keep the fever and pain down.
Hopefully next weekend will be much better!
Saturday, May 3, 2008
Our day started out fun - Zoe woke up first and came to get Doug and I. We all played a little game of guess what Zoe wants to do for the day. She complained a little about her throat, but not too much. Zach woke up not much latter. We were all treated to Daddy making us breakfast -- YUM scrambled eggs, toast, coffee for Mommy and Daddy, OJ for the kids.
Zach laid down for his nap at 11ish and I was going to pack to see if we could head to the beach for just a little while to get some fresh air and sun. That never happened -- Zach woke up screaming. A nap is never done if he is screaming -- something was wrong ----- YES, SOMETHING was very wrong, he had a fever of 104.5. I tried so hard to calm him, he wouldn't calm for anything. So instead I held a screaming/crying little boy for over 2 hours. I gave him some Tylenol and he seems to be doing okay for now - he is back in his crib for now, napping.
So much for a nice, fun, relaxing weekend. Maybe tomorrow will be better ;-)
Friday, May 2, 2008
Zoe has Strep throat without a doubt. Poor kid - bad Mommy for thinking she was just being dramatic. She'll get better soon as we've started antibiotics today.
Zachary -- well we need a NEW Dr!!!! A couple of weeks ago Zach had seen a neurologist because of what we thought were seizures (they still haven't been ruled out) The neurologist was VERY concerned with Zachary's size and highly recommended us seeing a GI and then an endocrinologist if the GI couldn't find anything. Of course he couldn't send us to the GI that had to be approved threw our pediatrician - which more or less she flat out refused to do. She said she has already run tests on Zach that have come back negative and sending him would be a waste of every one's time (even though the last of these test were run when he was 6-12 months old). She also doesn't believe Zach has SPD and that OT is a COMPLETE waste of time. The only reason she seemed to think SPD was a wrong diagnosis was because he isn't autistic - which you DO NOT have to be in order to have SPD. SPD is also known as the hidden issue -- this is for a reason, sometimes you see it other times it doesn't present itself so clearly. She does believe the diagnosis of Apraxia, however, is dead on.
I do know something is definitely wrong with my son (much more then Apraxia) - For once I stood up to her and as she was saying things about my son I would stop her and say wait a minute --- no he has NEVER done that (mouthing objects), or but when we are in a room of people he just stands and looks at the ground, or ect..... ect..... She had NO idea what to say to me. The neurologist had said our Dr is a good Dr but she tends to be very holistic and Zach definitely has issues that need to be addressed head on. The neurologist also believed that Zach has SPD and Apraxia.
I have a call into Zach's neurologist for recommendations and I'm trying so hard to get a hold of the therapy place (so far just a machine is picking up) to see who they would recommend.
I'm so very frustrated -- my son has had issues from day two of his life when we were told he may go into cardiac arrest because of his thyroid. We have been so concerned with so many things in 19 months of his life and now to be denied going to a specialist because she feels he is fine yet in 2 weeks I've had 3 professionals say --- "NO, Something is definitely wrong with Zach" UGH!!! I just want to scream!!!!!!!
What a day it has been!!!!!!!!!
On a good note - Zach did much better with his brushing and joint compressions today, he even asked for "more" by signing as soon as I signed "all done".
Thursday, May 1, 2008
Zoe had a good day at school. BUT all day long, every time she ate something she complained of her throat hurting. I just looked in it and it doesn't look so good. Guess she won't be going to school tomorrow and she will be joining Zach and I at his Drs appointment. Poor little girl :-(
Zach handled his day rather well. It was a very busy day full of learning new things.
First stop was our visit with Ms. Kristin - He likes her much better now. Today's session was an half hour of fun play time. Zach loves balls but when Ms Kristin tried to get him in the ball pit he flipped out - guess he likes looking better then being in with them. Next Ms Kristin tried to cover him with a mesh like swing thing OH BOY -- he HATED it - walked away from her so fast, but when she put a big ball in it he liked to push it with his head. They also played in some sand (Zach doesn't like to get dirty) he was so careful picking the toys out of the sandbox. He had some good things happen like when Ms Kristin told him the sheep say "baaaa" and Zach responded with a flat "ba" He told her a couple different times then when he showed me the sheep and I asked what it said he responded with a "ba" as if he was saying "duh, Mom, haven't you been listening?!?" He also responded "B" to a bean and "Da" to a duck - after Ms. Kristin told him of course. We are going to be working on him getting the H sound out and M sound as well until we see Kristin next week. Poor little Zach was so tired when all was said and done with ST. We had to rush over to Zoe's school and once we got her I stopped at Wendy's so he could eat on his way home - I figured that way I could get him down for some type of nap before it was time for OT.
I felt so bad - I had to wake a very tired child to get out the door for his next stop -- OT with Ms Jerry-Anne. We only had an half hour session with her today. We learned how to brush Zach and do joint compressions when the brushing is done. He will be brushed every 2 hours that he is awake for a minimum of 6 weeks. This is to stimulate his sensory nerve endings in his arms, hand, legs, feet, and back. It should help him calm down and be able to focus better. We'll see where this ends up. So far I've had to do it twice since therapy and he HATES it!!! I think he will get used to it when it becomes more routine. He did a lot of heavy play and some puzzles for focus work. He seems to take rather well to Ms. Jerry-Anne. Until next week we need to be doing the brushing and joint compression (of course) but we are also to put him down with his hands first instead of sitting him on his feet or bottom. This is to build his arm strength because he has such poor muscle tone. Jerry-Anne had written in her evaluation of Zach that she believe he had mild to moderate SPD, but after seeing him have some issues today she said she thinks she was wrong and that he really is more on the side of moderate to sever with his SPD. We are doing the right thing by doing therapy and she seems like just the right person to help Zachary. Next Tuesday we go for a full hour session. I can't wait to see his progress threw all of this!
Next step was to get Zoe to dance. Zach was in heaven - his little girlfriend was there and he was so happy to see her. The girls got their costumes so we had to help dress them. Heaven ended here... he didn't like being around all of the kids and adults - so he shut down, just stood there looking at the floor. One Mom, who he loves, Kim came over and scooped him right up. He held onto her for dear life, would not look at her, but kept his head on her shoulder and you could tell he had found some peace.
We then went for my peace at the gym - I had a GREAT work out with my wonderful trainer Jessica. Poor Zach was still having a rough go of things - mostly I think he was just so overtired from everything today, different schedule, not taking his regular naps. So he of course had to stay in Ms. Sheila's arms. It was good he was with someone he is comfortable with and trusts. She has been wonderful for him.
When we got home he had another brushing session and still hated it. He will get used to it, he just has to. Then went right to bed - he'll sleep like a baby for sure after his very long day.
Tomorrow is another day, I can't wait to see what it brings us - things are really looking up!
7am: Wake up, get everyone ready
8am: Leave to get Zoe to school
8:20am: Drop Zoe at school
11am: All done with ST - leave to get Zoe
11:30am: Get Zoe
12pm: Home once again --- Have lunch -- somehow figure out how to get Zach to nap before we need to leave...
2:30pm: First OT session
3pm: All done with OT
4pm: Dance - ballet and tap for one hour
5pm: Home again -- try to feed the kids a fast dinner so that we can get out the door before...
6pm: My sanity time with my personal trainer for an hour
7pm: Rush home -- try to get the kids ready for bed
8pm: Bedtime --- as if Zoe is really sleeping at this time by (Zach yes - Zoe no way ;-) by....
10pm: I will hopefully be enjoying my quiet time with both kids sound asleep.