Frustration, but progress

So our movement forward suffered a frustrating setback. First of all Dr. Carter is testing for a Carnatine deficiency, which means all Carnitine needed to be out of Jasz’ system. So Dr. Carter told us to stop giving it to him, “for at LEAST 2 days before the test.” Well my interpretation was AT LEAST therefore, more is probably better. So I took him off of the supplement that day. Thinking I would go in Monday and he would have been off of it almost a week. The other frustration, which ended up being a comedy of errors, was that she wanted to run some urine tests. Do you have any idea how hard it is to collect a urine sample from a baby? They give you this bag with a hole cut out in it and the hole is surrounded by an adhesive. For boys you stick their little penis in the bag and stick the bag to their skin and hope and pray that when they squirm, scoot and crawl around, they don’t tear the bag off or lift up the adhesive so that the diaper absorbs it.
Well, Dr. Carter had told me to put the bag on the night before we were going to take him in, put the sample in the bottle they would give us and put it in the fridge. I decided to “collect” the sample during the naptime figuring he is active enough that a whole night was just asking for trouble. Well so was a naptime as the bag didn’t stick right and ALL of the sample went into the diaper and the bag was unusable.

So, on the day of the test I take him in. I immediately ask for a new bag. They called us back and they placed it on him…hoping they would have more success. Then they made me wait and wait. Finally they came and told me that they didn’t know what one of the tests were that she had requested. So they had a call in to Dr. Carter’s office and they recommended that I go home and they would call me. Ok so no go…argghhh!!

Well, meanwhile the bag is still attached. Eventually he peed, but a lot of the sample went into the diaper. But I brought in what I had immediately. They told me it was only enough for one of the tests she wanted. I figured that’s ok we’re half way there. They gave me a new bag and said they still had not talked with the Dr. So we went home.

Later that day they called me. They said that one of the tests he had to be fasting four hours prior to taking it. So we worked out a time when there would be 2 phlebotomists there and it would 4 hours since Jasz had eaten. She also told me that she had to throw away the hard earned sample as it had to be collected fresh and flash frozen on site. Since she hadn’t paid attention to that the sample was no longer useful.

Tuesday we go in at the appointed time and it instantly becomes clear that neither staff member is comfortable working with a baby. We put a pee bag on him and brought him in the back. I held my poor screaming child on my lap while the one tech tried her hand and torturing my child. Our poor boy held so still, as though he had already learned how to have his blood drawn (too young for that lesson in my book). She stuck the needle in and then grinded around in there for a few minutes and got nothing. They bandaged the arm up and the second tech tried the other arm. She pretty much did the same thing. They bandaged that arm. Both looked at me and said “what do you want to do now?...we don’t want to try again.” Well they shouldn’t have “tried” in the first place. They knew he was a baby and they scheduled it with me….they should have told me then they didn’t work with children instead of experimenting with my son!!! They then suggested I go to their other office as the tech who drew his blood the first time was working there that day. Then they looked at the clock and realized they would be closed by the time I got there. So they suggested I come back on Thursday at the same time and try again. They removed his pee bag and gave me a new one.

After thinking about it for an hour I realized, “hey I wasn’t happy with the first lady either. It took her three tries to get a vein!” So I called Dr. Carter and told her I needed a place that dealt with children. I found out that meant a trip to SB. I did my homework and found out the right person to go to and that meant I had to go in the afternoon. It also meant it would have to be delayed because I couldn’t fit it in my schedule this week.

Meanwhile, he is off of his supplement and it is making small issues. One he was becoming fatigued quicker. Also, now it could have been a coincidence, but he from Thursday night on was having night waking and inconsolable crying, which he had not had in months. Prior to the Carnitine he was having inconsolable crying bouts about every 4-6 weeks. We hadn’t had one since May. It suddenly started again. Now someone pointed out it could have been growing pains. And who really knows he wouldn’t tell me what was bothering him so really it’s anyone’s guess. But I can’t help but think it is at least a little related.

After a lovely weekend visiting with friends I took Jasz down to SB. Before getting in the car I strapped on the pee bag. When I got into the hospital lab, I immediately checked the bag. We had the biggest sample yet, but a lot had ended up in the diaper. They told me it was not enough and they put another one on him. This phlebotomist was GREAT!! Her name is April and she works in the Cottage Hospital Lab…worth the trip if you’re dealing with little ones. She got his vein on the first try. Now his poor little vein petered out so she did end up having to use his other arm too. But again on the first try. He was such a brave boy and Jasz actually stopped crying half way into the draw. Like he’s an old hand at this now. But by the end we still had no pee. So, he and I went to the Cafeteria and had a mother son lunch together. I made sure he drank a whole cup of soy milk and we played and ate. Went back to the lab and no pee. April was about to send me home and then she says, “you know what why don’t you hold him, turn on the sink faucet and let him play in the water. The sound of it sometimes helps.” So we tried it. He was super happy to be playing in the water and after a few minutes we checked the bag. It was full enough and not one drop had spilled into the diaper. Yeah for camp tricks!!

Now we wait. It will be at least two weeks (so as of now about one week left) before we have results. Because of this I rescheduled our next round of Dr.’s appointments. But we are still progressing in therapy. We have noticed he really holds his right foot out at an angle. Trina’s impression is that he’s comfortable that was and he probably feels more stable. But he was doing that with both feet and now it’s only one…so it likely will self correct over time and as he gets stronger. He didn’t go backwards in terms of skills he learned using his muscles being off the carnitine, it did by the end of 2 weeks really affect his stamina and he is still trying to get that back. He is also back to scooting more than crawling where he had been readily crawling….he’s sometimes resistant to that. That could just be him asserting himself though. So, we are now in the waiting and you will know when I know more.

Our many blessings!!

Wow it has been a while since I’ve written. I am not sure why it has taken so long, but right now I feel the need to share the blessing we have experienced over the last couple of weeks. First of all, we celebrated our ten year anniversary last weekend. Many of you probably realize that the date is wrong as we were married on July 8. But it was better for most to avoid the whole July thing so we celebrated a little late. To start the weekend my friend Michelle came on Thursday. This was such a joy as I have not seen her in 2+ years and she had not met Jasz yet. I knew the one thing she would want to do is go to the beach. So, while the girls were in school, we packed up Jasz and went to Pismo Beach where we were met by Erica and Amy and Willow and eventually Cami. For those who don’t know Willow is about 4 months older than Jasz. Honestly, I thought I was mostly going for Michelle (what a spoiled California girl I am), but in the end it was for me. Firstly, the ocean is my sanctuary. It has always been my place to reflect and think and pray. Surrounded by friends on a comfortable day listening to the sounds of children and waves was great for my soul. Makes me realize I should do it more. But it also made this momma so happy to watch Jasz and Willow play together. Now yes they both took delight at dumping sand on our blankets/towels. But they were enjoying each other. After a short while, Amy decided to take Willow to the water. I waited a while figuring it was an activity my not yet walking son wouldn’t get to really enjoy, after all, there was a slight haze in the sky and the water was freezing!! Boy was I wrong!! Jasz kept trying to sit in the water and this silly mother was trying to only let him get his legs wet so scooting into the waves was not going to work for me. I sort of forced the issue until he got it. A light bulb went on and he suddenly planted his feet in the sand. Then he enjoyed thoroughly the feel of the sand on his feet, his toes squishing the sand. Then he wanted to run in and out of the water. Well this means mom must hold his hands so he can and there we were “running” in and out of the water. One wave seemed small and was way huge compared to Jasz and just completely soaked him. He didn’t cry, he squealed with delight and asked for more. He never got cold, he just loved this new experience, and it seems the ocean is therapeutic for him too. It was a good thing I had brought a change of clothes for him. Although he had sand in more places than I care to write about here…it was a pleasure to share that moment with my son.

As for our Saturday night event…Our goal for our gathering was to have as much of our wedding party in attendance as possible. We did fall short of that goal, but with good reasons so it didn’t bother us a bit. What amazed us though was who did come. We had friends come from Oregon and Colorado. A few had to drive a decent distance. And those who live closer but have super busy lives, yet took the time out to spend with us. It was a lovely evening, filled with good food and great company. A time for memory sharing as well as catching up on our current lives. And those who are no longer with us were remembered. This night that we planned to host ten years ago was such a blessing. It empowered me and reminded me that we have surrounded ourselves with some marvelous people who will go the distance. A huge thank-you goes out not just to those that attended our gathering but to all who touch our lives and in many ways help us on our journey. Of course the biggest Thank-you must go to God. Without the graces He has bestowed upon us, life would be quite difficult indeed!! Thank-you to all who have called upon God’s ear on our behalf I truly believe these prayers are being heard and I watch the miracle in our son everyday!!

Have Shoes will travel

I think I said before that Jasz loves shoes now. He gets that you need them to go outside. At this point he doesn't really care whose shoes they are. Sometimes they are Alina's, sometimes mine. But on this occassion they were John's. He slipped his foot right in that crock and opened the screen door and scooted on out.

Closer to an answer

Yesterday was a GREAT day!!! I took John to see the Neurologist, Dr. Carter, again. She was so excited to see how strong Jasz has become. I could see she truly was happy about it, which is what made me feel good about her being his Dr. in the first place. She genuinely cares about her patients and their success. She also told me that she knew as a parent I must have been relieved to see that blood test come back negative, but that she was breathing a sigh of relief too.

We talked about so much yesterday so let me try to get it all down. I first spoke to her about Sherri's (the occupational therapist) concerns. Now let me go back and say I've noticed a pattern in Jasz' therapy. It seems that Trina and I will be super excited about progress and then Sherri will come in and be negative about the progress. And this has greatly affected my positive thinking. So the first thing I brought up was the first thing Sherri brought up...food allergies. And Dr. Carter ws in full agreement that Jasz may very well have food allergies. She was not so quick to jump on the celiac band-wagon. She rather when to cow's milk. Which actually, when I think about it makes sense. We have a strong family history of milk allergies and though I was not diagnosed with a milk allergy it definitely runs in the family. When I started thinking about it I realized something too. Last week I was pretty consistent about giving Jasz a glass of milk every day. And last Friday I remember thinking about how horrible his skin looked. I couldn’t figure out why. It was so bumpy and dry and itchy. A coupe of spots even looked blistered. Well I guess because I wasn’t feeling well, but on Saturday I forgot to give it to him and that trend continued this week. So, yesterday when I got him dressed for the day, I remember thinking how great his skin looked and felt. It was stills lightly bumpy, but a HUGE reduction from the normal. So she is testing him for a milk allergy and in the mean time I am to replace cows milk with soy. She asked me what dairy products he eats. I told her milk and yogurt. That cheese he refuses to eat. He will even pick shredded cheese off of eggs. She told me that something about the cultures in yogurt make those with allergies often not react to the yogurt. But cheese would make him react. She said she has noticed that kids pay more attention to their bodies than adults and he may realize that eating cheese makes him not feel well. Which would make sense as he ate it for about a week and then has refused it ever since. She said we could try goats milk cheese.

When I asked Dr. Carter about Sherri’s opinion of a wheat allergy. She said it’s possible and since she was running tests anyways she would throw the celiac panel in there. But the most common allergy in children is milk. She is running a celiac panel as well as the milk allergy test. She has also referred us to Dr. Kelts, a pediatric Gastroenterologist. She feels that though the allergies aren’t the cause of Jasz’ muscle issue, they are an issue for him and Dr. Kelts would be best to help us with all related issues to that. He also has a nutritionist on staff so once we do figure out Jasz dietary restrictions and needs she will help us develop a proper diet for him.

My next question from Sherri was the possibility for a joint problem. Well here’s the thing. Trina and I noticed just from the fact that he is getting stronger, his legs are naturally turning in more. And Dr. Carter saw this too. She says to me, “you can’t nit pick on everything. A lot of these physical leg issues self correct with him walking.” She doesn’t subscribe to the idea that if he learns to walk with feet pointed out they will form muscles that way and have to be corrected. She says many babies have the bowed in ankle that we see in Jasz….it self corrects when they begin to walk. She is of the same mind set that John and I were on before Sherri came into the picture. Progress is progress!!! However, she also said it is not unreasonable to get a hip x-ray and see if there is an issue there, as it doesn’t take much to do so. She said we would hate going the the Pediatric Orthopedist. Dr. McGuire is the better one, which is who Sherri recommended. She said we would wait forever to get in to see him, wait an hour in his office only to be given a slip telling us to get his hips x-rayed. At which point I said, “I guess I was hoping you would order the x-rays and see if there was even any need to go down that path.” So she did and right after our appointment I took Jasz over to Cottage hospital and had his hips x-rayed.

I also asked about Cerebral Palsy as Jasz is clearly stronger on the left side. She said she saw no signs of it in him. That most people favor one side. And though he is young to have a hand dominance he has done other things early so why not that? At this point Dr. Carter took a deep breath and I could tell she was not annoyed with me but with Sherri. She says to me, “you know I never tell the OC’s how to do their job. They know how to help kids get moving better than I. But many of them overstep their boundaries. They think they have experience in areas in which they do not.” She went on to tell me a story and she thinks it might have been Sherri, but not positive. But basically the OC in question told this mom that her son definitely had this degenerative disease. Even went so far as to print out information just so the mom could panic. She says the mom saw her after starting with tri-counties. So, by the time the mom got in to Dr. carter she was freaked out. Dr. Carter said she took one look at this boy and knew the assessment was wrong. But she ran the test for this disease anyways because the mom was so upset. The test was like $1500.00 and unnecessary and the results came back as she expected…negative. So she is not a Sherri fan. She also feels like Sherri is being too negative and needs to see progress for what it is…progress. I fully agree!!!

Finally, I asked the big question. Since Jasz has been improving so well on the carnatine, is it possible he simply has a deficiency? The answer is a HUGE yes!!! She smiled so big when she told me this. This is the metabolic disorder she is leaning towards and is also having him tested for. What does it mean if this is the case? A high protein diet, which again the nutritionist will help us with, and a carnitine supplement for the rest of his life…there are worse things. So in order to run the test, he must be off the supplement for a little while. It will be interesting to see if he goes backwards at all while off of it. She wrote a new prescription so that when he starts it up again it will be double the dosage. An interesting side note. She asked me if Jasz’ language has grown recently. I told her yes. He is now saying Izabella, DeDe (Dexter), ball, fish, no, yes, Amen, peace and many more all just started in the last week. She told me that that is an unexpected side affect she is having with the Carnatine. She told me she has had patients with both mental retardation and gross motor issues. Specifically she has a three year old who was only saying one word. She prescribed Carnatine for some physical issues. Within 2 months this girl had 20 words. She is not sure the mechanism for why this is so, but she has seen it many times over. Wow, that fascinates me!!!

Dr. Carter mentioned that Jasz’ platelet count was really elevated on the last blood test. And because it’s not uncommon to get errors she is retesting for that. She said we need to know because if it is high, it means his blood is thicker and he has a higher risk for stroke. That being said she did not seem overly concerned, so I won’t be.

Finally, I asked her about weaning him from nursing. She told me that she would like me to keep nursing him as it will only help him and she thinks it’s great I am still doing so. She said she may be ok with it in a few months as she doesn’t want it to be too hard to wean him, but for now it could set him back to wean him.

Oh yeah, I mentioned to Dr. Carter that we got Dexter. She thought it was wonderful!!! She told me that pets are the best therapy for kids. I told her how Jasz is already crawling more because he wants to imitate Dexter. She thought it was GREAT!!! I say this because again Sherri was not thrilled we got a puppy. She was condescending about it. But Trina and Dr. Carter both have agreed with me that Dexter may yet be the best therapy for Jasz. Jade is great mind you, but she is bigger (about 3 times the size of Dexter) and it intimidates Jasz. Dexter is just about right and I know he will grow, but so will Jasz’ confidence with him. I can already tell, those two are going to get in a lot of trouble together!!!

Dr. Carter told me if I had brought him in the first time with the muscle tone he has now, she would not have really thought there was a problem. She almost can’t believe the difference!! GOD is AWESOME!!!! So many twists and turns in our path, but He pointed us in Dr. Carter’s direction. And she thinks outside the box a little, and is very Positive…the perfect Dr. for our family.

Turns out sleep is important!!!

This last weekend my body finally said enough is enough. I woke up Saturday, but never fully woke up. I can't explain my symptoms exactly...I just didn't feel good. So I bummed around much of the day. I did take some time in the middle of the day to take Izabella to her first tennis lesson. But after that I was useless. We had lots of stuff to take care of last weekend so this was really frustrating. But there wasn't much I could do about it. I actually fell asleep on the couch in the middle of utter chaos. I eventually woke up due to Jasz' efforts. He brought me item after item in an attempt to rouse mommy and elicit a response. Finally, when my lap was full I was forced to acknowledge his attempts. I have to admit this response of my body was a little scary. I mean I've been sick before where I just couldn't function, but I had no clear signs of illness, yet I couldn't function. The rest on the couch improved my disposition slightly but what really helped was going to bed early and getting a full nights rest. Sunday I was a whole new person. I had energy back. I guess in the end my body just said, "enough is enough!!" I have been suffering with insomnia since the start of Jasz' diagnosis (or rather lack there of). I guess 3 hours of sleep a night isn't enough. And after 7 weeks of that my body just plain quit. Interestingly, I sort of expected a resuming of insomnia. And it has a little but not horribly. Sunday night I was only up a couple of hours later than bedtime. and Last night I slept like a baby.

Hopefully the trend of night sleeping continues...I do not want another day like Saturday.

Even babies can hit a wall

Well as though things weren't crazy enough for our family we decided to bring a new addition into the mix. We welcomed Dexter a puggle (pug and beagle cross) mix puppy into our home on Sunday. He is feisty but loves to snuggle too. He has beagle ears and a pug tail. The dad is "sneaky neighborhood dog," and all of this combines to make one cute family member. He and Jade play well. He eggs her on too and does sneak "attacks" on her. It so reminds me of my kids trying to scare John or I...so cute. And yes he does bring more work with him, but he also brings companionship for ALL of us as well as a new feel to our home...a good feel.

Our first night with him was rough as he definitely has the beagle howl. But then I realized he just needed companionship. I moved his crate so it is face to face with Jade's, the snoring wonder. He starts whining and she snores loud and he calms down...it is very cute. What a good big sister!!!

He is also motivation for Jasz. Jasz wants to be like Dexter. So he crawls and barks (which he sounds like a yippy puppy when he barks). Jasz calls Dexter Jade, but that is normal for him. I realized Monday that Jasz groups things together and gives that group of things a name. So, Jade means dog. although he started trying to say "dex" today. I also realized that "Bewa" must mean sister. He has never said Alina. A couple of times it has sounded like he was trying to and his mouth just can't quite get it. Well, Monday morning he was climbing on Alina, hugging and trying to tell her something. She wasn't fully paying attention to him so he started calling "Bewa. Bewa" until she responded. Once she answered him he stopped calling the name. I think Alina is hurt by it, so I tried to explain that it's his word for both of them because he just can't say her name yet.

This week Jasz is clearly sick of working. We all hit that point where we just are tired of working so hard and frustrated, and just don't want to do it. This week Jasz has hit a wall. On Monday when Trina came to work with him he tried to distract her at every turn. He also all but refused to stay in the play room where we normally work. We tried to figure out why. One theory is his "therapy" pj's. I finally sewed those pants far enough down that he was made uncomfortable in them. On Friday he wore them for about 10 minutes just fine, but then he tried to shift to get comfy in bed and realized he could splay his legs as much as he wanted. Oh the wailing. I endured for 30 minutes and then could no longer. He almost went to sleep immediately.

Saturday we went to Lake San Antonio. this was a fun, relaxing day in the sun and water and the whole family truly enjoyed it. Jasz particularly loved dumping "sand" down his back. I was still finding small rocks in his diaper the next morning.

Sunday is when we brought Dexter home, it was also the night when Jasz slept the whole night in his homemade therapy pants. He cried again but just as I was about to rescue him he fell asleep.

This brings us back to Monday and working with Trina. When he would stand up his feet were more out turned than they ever have been and when Trina tried to correct them he would say "ow, ow, ow." When we tried holding him in our lap straight legged he also said "ow" crawling he was ok with as it was fun to pretend to be Dexter. So Trina and I weren't sure if "ow" was actually meaning that hurts because he has for a while said ow as just a fun sound. So she told me to talk to Sherri about it.

So today. Today Sherri came over and the appointment was set up for what is normally a good time for Jasz. But today he fell asleep about an hour before the appointment, which is when he would normally eat a snack. So when she arrived, I woke him up. And he wanted NOTHING to do with what she wanted. She did start the appointment by apologizing for giving me so much to do last week. She said she didn't want me to stress about doing it all at once, this was going to be a long process. I had a list of questions for her the first of which was could the therapy pants be making him sore. She said yes absolutely. But when she looked at them she said they weren't going to do the job because the legs of the pants were too wide. So I need to get basically stretch pants and sew them together. I have the pants I just need to do it. Though she said they may be good for slowly introducing the therapy to him. But she suggested I put the correct ones on him during the day, so we don't interrupt his sleep too badly. And for only 15 minutes to start so he doesn't get too sore. But it needs to be done to straighten his legs out.

Second question was about swimming and if it would be god for him. She said it would not build the kind of muscle we want but if it lets me hold his leg straight while he kicks (so he doesn't quite realize that I'm doing it) than it would be a great therapy tool. The only problem now is that the weather in SM has been anything but hot. So a cold pool will not be a good idea. I want it to be fun and I don't want his energy being spent on keeping his body warm. The Paul Nelson aquatic center I have already discovered is not heated very much so unless the outside air temp is high enough it is not a good experience. What I really need is something slightly cooler than bathwater and big enough for me to get in too...any ideas?

Third question was about shoes. She suggested I revisit Robies (spelling?) and see if we can find his right size. The sandals she said would be ok if the length wasn't so off. But he clearly wants to wear shoes. So I guess we try Robies.

Last question: car seat safety. I got to thinking this last weekend that you know what Jasz' muscles are underdeveloped. There is an assumption in car seat guidelines that if a child is a year, 20 pounds and 26 inches long they are developmentally able to secure their neck against injury. But that assumption would be false in our sons case. She tested his neck muscles and said they were pretty good as there was no head lag when pulled to sitting, but she would err on the side of caution and she would face him backwards. So, that is another task ...turn the car seat around.

After lots of talking and Jasz eating a snack Sherri did try to work with Jasz. She tried to just have him sit on the ball. We even had Alina come and help try to encourage him to be ok with it. That way she was involved and he really does like to do the things his sisters do. Well nothing doing. Sherri put him on the ball and he freaked out. She thinks he has a little sensory issue, which she says is not uncommon. The fact that he got so whacked out by it tells her that he can't process that feeling. she also says he likely has a sensory input issue with his feet. So whenever I bath him I am to Vigorously rub the bottoms of his feet.

We ended early today as he was completely uncooperative. She kind of warned me that she and Trina would likely have to force the issue and be the bad guys. They don't want his family to be the bad guys, so they get to take on the role. She warned me that he would be unhappy and would probably fight. I told her that was fine I know it's to help him and I would much rather they be the bad guys!!

You know I was usually pretty good with homework. If I was told to do an assignment (except for a couple of years in my life) I would do it just fine. But never did my text book cry, or try to get away from me...at least not literally. This homework is tough, because it does not just depend on me. Yes there were a few things to buy and sew. But actually implementing the tools is much different. So I get frustrated and feel like I am not doing enough. Today I nearly cried on poor Sherri and she stopped and asked me how I was feeling about my son needing all this extra help. I took a deep breath and told her, "it was an adjustment. It was hard to come to grips with at first. but I've accepted. The part I have a hard time with is 'why didn't I catch it sooner?', and I know why, but part of me wonders if he would need as much help if I had connected the dots sooner." She says, "He is still young and in an age that makes it so likely he will have good results. Yes if we had caught it 6 months ago he would be further along now. but in the scheme of his life it likely won't make a difference." It was comforting to hear her say that. But even as I type this blog tears well up. I know every day is progress, but why does my son have to hurt to get better? Why can't he just understand I'm trying to help him run like all the other kids? This is by far the hardest homework assignment of my life. And I can't take an incomplete in this course. I must see it through. And never before in my life have I wanted an A so badly.

At least I feel God's hand guiding our family. You know I realized after our pastor laid his hands on Jasz and prayed over him, miracles began to happen. Some might say they would have happened anyways, but we have been led to the people helping us all along. And those people have helped make miracles happen. And I know in time I will see the miracle of my son walking on his own. And until that time I must keep in mind that it can't happen all at once. And this time truly is special. Jasz and I will have a special bond. And I have been given the gift of seeing how many people care about us. Seeing the responses on face book and the people following this blog have really made me realize we do have a lot of support. Thank you all!!!