Thursday, July 31, 2008
Zach had his follow up with the neurologist - well the neurologist's ARNP. I feel like it was a waste of time, money and energy - but that is just my feeling. We found out nothing really new and she wants Zach to be seen again in 2 months but by the Dr next time - Thank you that is who he should have seen today. Oh I was told by her first thing as she walked into the room - "I don't think the answers you are looking for will be found in neurology - you need the geneticist for that" THANKS --- considering Zach has a ton of neurological issues going on, yeah, I think the DR can help but not you lady!!! I was so upset by her! Not to mention she decided to look at some of Zachary's test that the geneticist ran and has me all worked up - I'm calling them tomorrow to find some answers.
Then Zach had an EKG done at the children's hospital. He did great! Laid there just as he was told, no fussing, such a good boy! The tech even gave him a matchbox monster truck - Zach loved it!
Of course it is Thursday so he also had ST today. His session went so well - he is doing something new --- repeating peoples sounds. Today Ms. Kristin said "ha ha ha ha" at something and Zach said it JUST like Ms Kristin as many ha's as she let out sound of it and all AMAZING!!!!
I think we are all looking forward to tomorrow being a no appointment day.
Tuesday, July 29, 2008
Monday, July 28, 2008
Today I needed to take Zoe to get some paperwork for school, I also wanted to talk with her about Zachary and all that is going on. I ended up spending an hour and a half with her just on Zachary alone. Her MA took the kids out of the room at one point so we could be able to talk better.
The geneticist had already sent her a letter about our appointment and has her own concerns of what is happening. We went over the tests that she is running and why. Dr. M was also able to let me know the geneticist is going to try some type of medical therapy with Zachary when we see her in August depending on the test results.
We also talked about the GI and Zach's GP about Zachary starting this new medicine. Dr. M also has concerns over it and wants an EKG run on Zach before we start the medicine. To be on the safe side of everything. Worst case scenario the drug can cause sudden death and since Zach has so much going on she wants everything to be okay first. She also wants an okay from the neurologist before we start the medicine.
We were also able to talk about Zach's upcoming visit (this Thursday) with the neurologist and questions she wanted me to ask them. She is also calling them before our appointment.
She was able to tell me how tirelessly she has been searching for answers on what is going on with Zachary. The most wonderful Dr in the world even shed a few tears with me letting me know that her door is always open for Zachary and I to come in whether it is to cry or help him she won't stop until we know something and are able to help him become a full functioning adult.
We are so fortunate to have found her!
Saturday, July 26, 2008
I was given a web-site that has some amazing information on it..... http://www.digestivedistress.com/main/page.php?page_id=17
I found this and just wanted to share because it made me understand a bit more of what Zach is going threw.
Imagine being healthy one minute, then terribly ill with stomach flu-like symptoms the next. However, the stomach flu does not go away. You fall chronically ill with these symptoms for years; you are assaulted by bouts of daily nausea—in the most severe cases, unrelenting vomiting.
This is the picture of idiopathic gastroparesis. No one can really explain what happened to make you so sick. The medication to treat this stomach disorder doesn't always seem to help.Regardless of how one develops gastroparesis, the symptoms are similar for all. Listen to the voices of the sufferers. They can describe the symptoms of gastroparesis better than anyone can.
Mid-abdominal discomfort after eating is a frequent complaint. Some have described it as a "large rock sitting in your gut". For others, this is not just discomfort, but actual pain.
"Every time I eat, the abdominal pain is unbearable.""The bloating is horrible, I just 'balloon-up' after eating.""I'm afraid to eat, I feel so sick afterwards."
Nausea, especially in the evening, is also very common, along with acid reflux (the bitter taste of stomach acid washing up into the mouth).
"If only someone could take away this terrible nausea!""I live with this nausea twenty-four hours a day, seven days a week, I can't take it anymore."
Another characteristic symptom of gastroparesis is vomiting of undigested food many hours after eating due to the weakened stomach’s inability to properly churn and mix food.
"I wake up in the middle of the night vomiting."
Unrelenting vomiting may occur in those with severe gastroparesis.Now read what the experts say—those who treat these patients:
"Nausea and abdominal pain are the most common complaints of patients with gastroparesis." "Nausea is a very severe, debilitating symptom, and antiemetics should be used extensively." "Once nausea leads to vomiting, a cycle invariably ensues, resulting in dehydration and hospital admission." "Therapy in gastroparesis should be aggressive and extra antiemetic efforts supplied in addition to the prokinetics..."
In severe cases, people have trouble keeping food down. To stop the dramatic starvation that they are faced with, they may need nutritional support via tubes inserted into their intestines, or total intravenous nutrition. Total parenteral nutrition (TPN) means feeding not by mouth, but by a needle, and in this situation, a catheter line delivering liquid nourishment.For less severe cases of gastroparesis, all the same symptoms are there: nausea, intermittent vomiting, bloating, belching, acid reflux, pain, and loss of appetite.Other vague symptoms can also occur with gastroparesis and may be related to autonomic nerve involvement. Autonomic nerve involvement in idiopathic and diabetic gastroparesis is fairly common.
These symptoms may include:
lightheadedness (especially with body position changes),
difficulty in urinating,
tingling sensations in the extremities and,
circulatory changes in extremities.
1. Hoogerwerf, V.A., M.D., Pasricha, P.J., M.S., Kalloo, A.N., M.D., and M.M. Schuster, M.M., M.D. Pain: The Overlooked Symptom in Gastroparesis. American Journal of Gastroenterology 1999, 94:1029-322. McCallum, Richard W., M.D., and Sabu, J. George, M.D., Kansas City, Kansas: Clinical Perspectives in Gastroenterology, May/June, 2001
Friday, July 25, 2008
WRONG....I woke up with a bug this morning so we will be waiting on the medication for Zach.
Man, that doctor knows everything LOL Yes, just in case this isn't a coincidence that I have a bug we will wait. I'm worried enough to start this medication with a child who isn't sick.
AH more waiting - that is all I need ;-)
Thursday, July 24, 2008
The GI was not "thrilled" but somewhat happy with this progress. He decided because Zach did have some progress to try medicine first.
The bad news....this doesn't put Zach out of the clear of getting a feeding tube. The doctor also said having gastroparesis at this age is not a very common thing and that the medication can have very sever side effects so I need to watch him closely.
The medications don't normally work very well to help GP so we have to wait (yet another waiting game) and see how Zach tolerates it. If he has any reactions to the medication we are to call right away and stop the medication then talk more about a feeding tube. If all goes well we wait until the end of October and see where his progress is taking him, then have a discussion from there.
The GI does not know why Zachary has GP, he said it could have been caused from Zach getting really sick at some point and this is the outcome or (more likely) Zachary was born with it. If it is because of the first the doctor said it will take years to go away, if it goes away. If Zach was born with it he will have it the rest of his life. The official diagnosis is "Idiopathic Gastroparesis".
I have come across a couple site from an adults stand point -- Zach is not able to tell me how he feels but I can only imagine.
I think my nerves are worse because of his vomiting this week and now we are also back to having very bad diarrhea (not as if it is ever much better but he goes threw stages) I don't know if he got worse just before his appointment so that Doug and I are prepared for what we may face ahead or if it is just a rather large coincidence.
We need to be at the children's clinic at 9:40am for a 10am appointment with his dietitian and hopefully they will be able to squeeze us in to see the GI, but if not we head back down there for a 2:15pm appointment. AHHH, what to do with the in between time?!?!? Can someone scream Sophie may need some shopping therapy?!?!
All anyone wants for their child is the best. I'm trying so hard to do that for Zachary but sometimes Life's Struggles just seems so much harder then they need to be.
Wednesday, July 23, 2008
I wish people would learn to keep opinions to themselves, especially when they have nothing good to say.
I wish people would take the time and learn not everyone is the same.
I wish people would take the time to slow down, enjoy life because it is short and be happy.
I wish people would see someone who is different and think of all the strengths that person has.
I wish when people didn't understand a situation someone was going threw they would take the time to learn.
I wish people would realize if they took the time to learn they could really help someone in a positive way.
This all came about because I talked to my BFF today and she had run into my grandmother and aunt today - I haven't talked to my aunt in ages. My grandmother was sweet but my aunt had some obnoxious words about me and my situation with Zachary. I can't help but be upset - I don't want to waste my energy as I know it is better spent focusing on other things, but I am upset - I'm livid!
Tanya gave me the best advise -- "Smile and look the other way" These words are wise words from a mother who has been threw so much and has so much strength - strength that I admire more then she will ever know! I'm sure it will take some practice - but here I sit smiling and trying with all my might to look the other way!
I believe there aren't enough compassionate people in this world and if everyone would do just one kind thing a day for either someone they know or a complete stranger we could make the world a better place. Just even a smile for someone can make all the difference ---- go ahead try it, you may even find you feel better inside!!!!
I don't know what to really think of today. Zachary had his first appointment with the Geneticist today. I liked her, that is always a good thing.
The appointment started with 3 people in the exam room going over the history I had already sent to them. I guess maybe it was a little more detailed hearing it from us. It sure was nice to know it had already been read over as the one lady kept saying "ah, yes I remember reading that in the information you sent"
Next they all left the room and took the pictures I had brought with us to go over the information with the doctor. Then they all, including the doctor came back into the room and did their examination of Zachary. We did get a definite diagnosis from the geneticist of apraxia of speech. She also told us that there were some good things about Zach along with some not so good things. It is evident he has had a rough health history his whole life, but on the plus side she said he seems extremely intelligent and is good at engaging himself.
Of course she could offer no clue as to anything that is going on with him at this point without running more tests. She suggested doing a more precise chromosome study on him that will cost anywhere from $300 - $1600 depending on if we can get it approved or not by our insurance company. Also doing yet another urine test on him - but something that hasn't been done, this will test him for a metabolic disorder, she had a concern because of the smell of maple syrup that has always existed with his urine since he was born.
For now we wait --- the past 22 months of Zachary's life has been one big waiting game and right now is no different. We go back to see her on Aug 20th - all the tests will be back by then and we will go over them in detail.
Let the waiting continue.......
Tuesday, July 22, 2008
I heard Zach in his room this morning, a little crankier then normal. I would usually let Zoe go in and get him but something told me I better get him....good thing I did. Zach had vomit all over his crib. He isn't sick, it is from his gastroparesis. So I'm sitting here thinking it is a good thing Thursday is right around the corner.
Monday, July 21, 2008
Because of Zach's apraxia, he has always had a hard time moving his mouth - making it into certain shapes, at times not being to open very big, not being able to move his tongue to the side or sticking it out.
Until last week anytime you asked Zach for a kiss he would come up to you and lean is head on your face or shoulder. His kiss was more of a hug (still special, but just not the same) - it was very rare that you would ever get an open mouth slobbery kiss that all infants give, in fact I can only think of one or two times Zachary gave me a real baby-like kiss.
This all changed last week when somehow, sometime, Zach realized he could get his mouth to pucker up, kissing noise and all. I was very happy when I got my first kiss from him last week, but disappointed when he could only do it once and then he struggled, as he struggles with so many things.
Yesterday, however was a completely different story -- I pushed for those kisses, begging and pleading, bribing him for a kiss that I've so longed to have from my son. Showing him myself "see mommy does it this way" I'm sure looking like a fool as I'm kissing the air and then his cheek.
I know how cheesy this must sound to some of you who are able to take those slobbery kisses for granted, I mean I know every parent longs for the first kiss from their child but after they've experienced once - it becomes no longer a big deal, because they know their child can do it - don't get me wrong I still remember the kisses Zoe gave me and I still remember loving getting them, but I never had to think twice about them - I knew they would be there and at any moment she could kiss me, I loved her kisses just as much.
For me with Zachary the fact that he, just now, at 22 months 1 week old is just starting to be able to kiss me melts my heart. I also have no idea if this is something he will be able to continue doing, or if it will stop.
Which brings me to today...I asked for a kiss and Zachary looked at me, tried to make his mouth move and couldn't -- this time he didn't give up, he tried, tried with all of his might. It took a couple minutes - I had just about given up, from watching the struggle on his face -- mommy needs to learn - NEVER give up! Zach did it!!!! He came up to me threw his arms around my neck squeezed and kissed my cheek. Zachary was all smiles as he ran away from me trying to find Zoe and Mommy was all smiles with a tear running down her cheek where he had just kissed it.
Saturday, July 19, 2008
He hasn't been able to get out any N sounds so far today - I was eating a banana and he has the sign for it (well, had the sign) and he looked at me like "hey I want that" so I was trying to get him to tell me by saying "oh, you want some nana........na...na" normally he can repeat nana -- not today his mouth was moving and no sound was coming out so I said "sign it" and was showing him the sign (which he knew) but he couldn't do that either.
Yes, I have a feeling today is going to be one of the frustrating times.......
Friday, July 18, 2008
This week has been me playing role of single mom. Doug has been busy with work so we haven't seen him at all. Tonight was nice he came home early, with a bottle of wine for me and Zoe's favorite dinner - Chinese YUM!
As I'm typing he and Zoe are watching a movie, Zach is in bed, and I'm enjoying my present.
I'm looking forward to tomorrow, we have some friends coming over for a celebration dinner - It is a surprise for my friend Alison who just landed her first job since she moved here!
Thursday, July 17, 2008
Zach has been all off key lately. You know the stuff I've been rambling about but not had the words to come up with. I'm at the point where I need to let my words out.
Basically his apraxia is getting worse (that is the main reason for introducing the PECS) - I still don't really have the words to explain this right to everyone, so forgive me ahead of time. For one not only is his verbal apraxia worse - but he is also exhibiting a lot of signs of motor apraxia and to me this is very scary. It is so hard to watch my son not be able to have his body move the way it should - for example he used to be able to sign (he still can from time to time) but now most of his signs are becoming him hitting his arm, or rubbing it. To the times he is not being able to throw a ball, or the days the falling as he is walks is at an all time high. The look in his eyes, the pain, the fear he has - you can see it in his eyes, he knows what he wants to do or say and his little mouth or body part will start to try and move but nothing. The look turns to disappointment, sadness.
Today, today was a bit rough....not only is the apraxia getting worse but the eye contact is also getting worse. Today, he had Ms. Kristin so frustrated because he would give no eye contact what so ever, she tried all she could. I asked "is this normal for a child this age?" her answer was of course "no" she went on to tell me she pushed him a lot harder because she expects more because the eye contact used to be there more so, never normal but it was there. She went on to say now she understands why our Dr has been so worried about autism and sees now why Zach needs to see the DP right away.
Life's Struggles are at their finest right now for my little man. Right now it is so very hard for me to see the progress that I know still exists, somewhere in him.
I'm a bundle of nerves at this point - surely to only get worse at the day approaches. I'm anxious - I just want to know what to do, if Zach will be getting the j-tube or not.
1 More week and there will hopefully be some answers instead of more puzzle pieces.
Wednesday, July 16, 2008
Today I woke up and turned to Doug saying "I can't believe in one week we will be out the door and on the way to meet the Dr" He just kind of looked at me like I'm crazy and reminded me it is the first time we are meeting the geneticist and that we most likely won't be given any answers. To which I replied "Yes, but it is another step to helping Zach" She also has so much detailed information on my child, maybe she might have some ideas running in her head. I also reminded him that it meant the next day we would have some answers as it is 1 week and 1 day until we see the GI and hear what he has to say about helping Zach with the gastroparesis.
As I was getting myself ready I manically went around and cleaned. Then I sat I looked at my binder which is too small for all the information that is placed neatly inside (note to self: buy bigger binder soon!). I also remembered I am to bring family members pictures in for the appointment - well I remembered yesterday and started yesterday - but finished today getting that all in order. I put my binder along with the pictures I have already and Zachary's baby book to the side and ready to grab.
I also called the DP's office again and was told he opens his schedule up one month in advance - Next month is open, but Zach is still on the wait list (2 wait list to be exact - thankfully he won't be waiting the full 12 months it normally takes for some children). The lady I talked with was wonderful and said call the very end of this month or very beginning of next month and she will get Zach in the first week of September.
I remember sitting here a couple weeks ago thinking I couldn't believe how long it takes to get into some of these Drs and now I can almost touch the dates ahead of us.
Tuesday, July 15, 2008
To start teaching him Ms. Kristin had Zach sit at the top of the slide and he had to pick an animal off the board that he wanted her to give him. He would pick something, say a fish, she would say "oh, you want the fish" and he would have to try to say it, or nod, sign, or attempt to say yes then she would give him a fish - that he in turn got to push down the slide. Ms. Kristin is good at making games out of everything so when the fish got to the bottom her hands went in the air and she said a yippee. Zach caught on really fast and the next thing I knew he would have his hands in the air as soon as whatever object she gave him got to the bottom of the slide. He did this for a while but then she lost him so she tried something new.....him in the tire swing and using the PECS - pictures used were more, swing, all done - yeah this will take sometime - he didn't fully understand what was going on at this point.
The best part of today was Zach learning he can communicate with us in other ways. I truly think this is going to come in handy.
As Zoe said on the way to the gym tonight "Mom, it is getting really frustrating not understanding Zach - he can't even sign right anymore" as her hands went over her ears and Zach replied with a "bbbbbbbb,dadadada" and she said "See! When will he tell me something real!" It is a heartbreaking situation and one that takes a lot of explaining to a 5 year old. The good thing was when we got home she grabbed Zach's hand and told him "I'm your big sister, no matter what I'll always love you, and be here to help you" added a kiss on his forehead, then she ran away and went on with her own playing.
I love watching their love!
Monday, July 14, 2008
I found this (what I think is) great website www.autismshop.com and was able to find all I need to get our PECS underway. Ms. Kristin should have some pictures ready for it and my list is also ready for her.
Yes, I'm overly excited about getting this underway - it has been hard watching my sons signs all turn into the same thing -- him hitting his arm for anything he wants. It will be nice to have another way to communicate with him - hoping this goes well!
Tomorrow we will be starting our alternative communication usage with Zach (Picture Exchange Communication System (PECS)). Ms. Kristin should have some pictures ready for me and I will have the challenge of creating the system for at home. I'm hoping that Zoe will be able to help me get things all put together.
I also need to remember we have another new schedule with OT this week. I can't wait until things get back together for Ms. Jerry-Anne so we can have the same weekly schedule again.
This is also the week before all the BIG appointments. I have to say I'm a little on edge about how they are going to go. I'm so tired of all the waiting.
Here is to a new week, and another new challenge to overcome.
Thursday, July 10, 2008
Overall I'd have to say this week went really well, in comparison to his last 2 weeks. Zachary is definitely having some more issues and I still can't find the words to let it out on here yet.
ST was good. The therapy place was so quiet, it was really good for Zach. He did good, his focus was there and there were times you could really see his brain trying to figure out how to let the sounds out of his mouth. This is amazing to see, and so hard for me to describe. It is so very emotional to watch happening.
At the end of his session Ms. Kristin along with 2 other SLP's and I had a long talk about introducing an alternative form of communication to Zach's daily routine. For now we are going to start with a picture board, but we were also discussing what to do if that doesn't work for him or if he gets worse. If that happens we would be looking in to computer devices, I asked about pricing and holy cow - the prices are insane the two different ones she showed me they have in their office were over $1,000 and the other was close to $10,000. They did let me know that most times insurance will cover a large percentage of the cost of the AAC (alternative augmentative communications). That really gets me when it becomes a possibility that my son may need a machine to help him have a voice and insurance will cover that but they won't cover any more then 10 ST sessions a year! That wouldn't even be a months worth of Zach's sessions.
On to make my list of words I need turned into pictures.
Wednesday, July 9, 2008
OT: Zach was practically bouncing off the walls from one thing to another but it wasn't lack of focus. He was so happy, and very animated - I can't count how many times he had Ms. Jerry laughing at him. He was very brave and did some things he normally hates to do - but today he did them with confidence we haven't seen before.
ST: Zach was still very hyper and played with one toy the whole 1/2 hour (never in almost 3 months has this happened). It was a giant peek-a-block fun cube with a bunch of peek-a-blocks. He was sure having fun and his focus was so good it didn't leave the blocks until the very end. Oh, and thanks to Ms. Kristin he now knows what it means to be a destructive boy. She had him hitting the blocks down as he was stacking them and boy were they flying across the room!
At the end of both sessions he had a somewhat hard time with transition - but I think it was only because he was having such a good time today.
I'm supposed to be looking into a bunch of new therapy things to be using at home with him, right now the main things are a weighted vest, blanket, toy, and an oral massage brush. The web-sites are filled with so much (even some great ideas for Zoe) I'm enjoying looking threw all of the sites. Here are 2 links if anyone is interested.... http://www.southpawenterprises.com/ http://www.pfot.com/
His OT and I also had a conversation about removing some foods from his diet. Many of you know that I've been contemplating going gluten free for a while now, I feel safe doing so now that his tests are back, but still want to discuss further with his Doctors. Ms. Jerry would really like me to take out
I find it interesting wheat is also on this list. She wants me to do so because of the history of latex allergy with Zoe (sounds funny I know) but the thinking is it is worth a try to see if it helps him in anyway. She wants to start here and then move to a completely gluten free casein free (GFCF) Zach is already casein free (has been his whole life) already is because of his sever milk allergy - yes we even need an epi-pen for his reactions to anything with casein and whey.
Two more weeks and we will be on our way to see the Geneticist, Nutritionist, and GI! To think when I got the appointments it seemed so far away!
Tuesday, July 8, 2008
Today's sessions went very well. It started by Ms. Jerry meeting us in the lobby holding a weighted vest. She had never tried this before on Zach because he is so small, she wasn't sure she could get it to stay on him, and the weight has to be so very little (weights can be no more the 10% of the child's weight - Zach isn't even 20lbs). As she was putting it on she was telling me she was trying it because we were going into the dreaded "BIG yellow room" - where we have never had a successful therapy session. It was the only room open so we had no choice.
I swear this was one magical vest! Ms Jerry put it on over Zach's head, yes, it was big but it didn't seem to bother him in the least. I didn't see him fuss with the vest on even one time. Zachary took Ms. Jerry's hand as she headed us down the hall into "the BIG yellow room". Little man had such a wonderful smile on his face! He climbed right up onto the blue mat table and let me brush him, and try something new. Zach is now getting his mouth brushed (not teeth - he does that daily ;-) but the roof of his mouth. He normally doesn't like anything in his mouth but food. Ms. Jerry gave him some green tubing for him to chew and he seemed to really like it. I also had to use a massaging brush with a vibrator in his mouth since he bit my thumb. Now I need to go out and find one for him.
After a successful OT session of Zach doing his tasks and staying focused on them it was time for ST...
A good session there too and this time with an added element - we were still in "the BIG yellow room" and during this session another child had to use it with her therapist as well (told you it was big) This particular girl cries a lot and normally when Zach sees/hears her he turns off. Not today, today he put some focus on her but not for very long and went right back to what he was doing (play-doh). ST went so well - the best part of it all was his focus!
Go little man GO!!!!!
Sunday, July 6, 2008
This was a well deserved, family fun weekend! I don't even really know why - we did a whole lot of nothing but it was such a GREAT nothing to be doing as a family! We were together, enjoying every moment we could, laughing, playing, watching movies, BBQing, more laughing and playing - I wish everyday was so wonderful!
I hope everyone reading this had a happy, safe, 4th of July weekend as well!
Thursday, July 3, 2008
Wednesday, July 2, 2008
Ms. Kristin and I had a very long talk today and have come to the conclusion something else is going on. At this point I'm crossing my fingers, trying to stay strong, hoping, praying that this has to do with his stomach issues and once he gets some treatment will return to our Zachary that we normally know.