Our Family Whirlwind

So Much News....

So much news to report...last week we had Jackson's evaluation and he doesn't qualify for the special education program. The school system doesn't consider sensory integration disorder a special need. So they said that if this continues, when he is in kindergarten/1st grade they may pull him out then. This is exactly what I was trying to avoid. But, I have had some time to think about it and decide what our next move will be. Our PT Jane recommended a preschool that has dealt with this before. I called them and I was so blown away. They are great and I think it is going to be a wonderful fit for Jackson. Who knows-he may learn ways to correct some of the behaviors and not need special ed-maybe an OT in the classroom. He is so ready in many ways and I am so excited for him. He talks about making new friends all the time-it is really sweet. He wants to do art time and story time and is really really excited. So, on Tuesdays and Thursdays he will be in preschool. I also signed him for a class on Wednesday mornings at Gymco. They do a lot of tumbling and running around. This was also recommend and I have heard from other families that they were very pleased. Anyone can go-but with kids that need more stimulation, they get that through these programs. So, all in all I think we are going to be ok. I am so excited for him. We are going to go to a trial class next week and will visit the preschool soon.

Parker pushed himself up into a sitting position on Monday!!!!!!! This is so big, big, big!! He was a little surprised-but every time he does it he looks to me and smiles. He is also sick right now-because he got ahold of his feeding tube in the middle of the night last week and drank a little. Anything that is liquid goes right into his lungs. So, I am just watching him right now. His O2 has been a little iffy, but we'll see how it goes.

News from the geneticist is that they did not find a defect for the kidney gene they were looking for and his muscular levels were within normal range. So, she said this indicates his issues are a neurological problem. Something is not firing correctly within his brain to his muscles. We are trying to get the MRI done on his brain to help figure this out. They are in the process of searching their database to figure out how to link all of this together. Frustrating because I would really like some answers...but more waiting and more tests. Hate that part. I am also in the process of getting all of our stuff to the Mayo Clinic in search for answers. They deal with the mitochondrial issues more and I am hoping they can help us. Will update you as that unfolds.

My biggest boy, Austin is going to play hockey for EGRAHA-finally!! He has been wanting to play for about 4 years and my mother is "sponsoring" him. He cannot wait-we got his equipment the other day and you would have thought it was Christmas morning, really cute. He also needs braces-so big changes before second grade:)

Star Puffs

It was kind of a junky weekend because Jackson was sick over the weekend, but is feeling better now. So, we didn't go anywhere. Parker had speech therapy yesterday and is making some nice sounds. She still estimates him being at a 0-9 month level. That is hard for me to hear. Jackson had feeding therapy this morning. He had to eat three star puffs (Gerber puffs) and the first one he gagged and threw up. It is very hard for me to watch this. He got it down and then got a fruit snack. The second star he ate was with a lot of gagging, but he didn't bring anything back up. The third star he ate he only gagged once. He ate all three in about 40 minutes this time-so he had 20 minutes to play with Ms Nora and that was fun. He was giggling and playing after that. He did a lot of crying during the therapy and told me the star would make him sick. So, he did better today, but it is so hard for me to remain calm and positive when that stuff happens.

Parker had his therapist Ms Jane come out from Early On today. I stepped into the hallway to make it easier. He still cried through most of it, but he was sitting up nicely and she had him bearing about 50% of his weight on his legs. Standing up by the couch and supporting his chest and bottom. He worked so hard and was so tired, he laid down during a break and fell asleep right there on the floor! She said hopefully by the end of the summer when it's time to return the stander to them we will be able to order the gait trainer (which is what Ms Beth said as well) she is going to see if there will be one for us to borrow while we are in the ordering process of his new one.

I also just got something in the mail that says Jackson just got approved for the secondary insurance through Children's Special Health Care Services. This will be a big burden off of our finances, with both of them being on it. I have to fill out all the paperwork and hopefully he will be active on it by the end of the summer. Tomorrow is his preschool eval and I am very excited about what they will have to say. I am still trying to figure out which center he will go to-the place called BRAINS or the Developmental Enhancement program to help with the behavorial aspects of his autistic disorder. I spoke with both places and I just need to figure out which one will work best for us. I also want to make sure it isn't going to be overload for him, with OT for feeding and special education that we are already doing.

I am missing my Austin as well. He has been at his dad's this past week and I know he is having a blast, but I miss him. He was sick a couple of days ago which made it harder I think. But-we have everybody together this weekend. So, I am very excited.

Feeding Therapy

Jackson had feeding therapy yesterday and it went ok-hard but ok. It took him an hour to eat three cheerios. Yes, an hour. Twenty minutes for each one. A lot of crying and telling us they would make his tummy sick. Made my tummy sick. It is behavioural-but how to change it in his mind that it's ok to eat is going to be hard. Ms Nora said that when kids have had horrible hospital experiences and things happen like Jackson has, they have a negative eating experience because they associate the two together. So, he ate the first cheerio after twenty minutes of crying and trying to escape the highchar. He then got to have a fruitsnack and get down to play for a bit. When it came time to eat another cheerio-I had to leave the room to see if it would be better. No, he did the same thing. He was playing with Ms Nora and accidentally put the cheerio in his mouth and started to cry when he realized it was in his mouth. She praised him and he did ok. Then he got to have another fruit snack and they did this routine again. Our goal for this next week is to have him eat three cheerios a day. I honestly don't have an hour each day to sit there with him, so we are going to break it up into 15 minute snack times. Each cheerio he eats, he will be rewarded. Hope it goes well. He is getting sick too, so I'm sure that didn't help.

Parker had his PT yesterday. I sat in the room, but hid behind his stroller so he couldn't see me. He acts up more when he knows I am there. She had him working with sitting at a little table with his favorite toys on it. Then she helped him stand up and supported his bottom while he beared weight on his legs. It wasn't pretty, but he did it!! She also worked with the peanut shaped therapy ball. He had to "walk" on his arms to reach his blankie-he cannot bear his weight on his arms. He did ok with it, sometimes he beared weight and other times he didn't. She did say the stander is definitely helping. She also said if we can continue with the stander for the rest of the summer, he may be ready to try the gait trainer (special walker that supports his bottom and torso) soon. He cannot go to a regular walker because there is no way he can support his trunk right now. But, small steps for him are HUGE. He also signed "more" to her when he wanted more blocks. BIG deal as well. It is very subtle when he does it, but that is what he is trying to say. I'm still trying to get him to do it for me. Little stinker:)

We are waiting on the lab results we had to do on Wednesday which will show his muscle issue and kidney stuff. We are also going to have to pay the copay for his wheelchair because our secondary insurance will not pay for it. Ugggg!!

Genetics and Pudding

So, we had Parker's genetics appointment yesterday and I left feeling like it was a waste of time. They said there is definitely something going on-they just don't know what. They are going to search their database to try to come up with what is going on. We had labs today-looking for a specific defect on gene 16 for his kidneys and looking at another gene for his muscles. If those come back negative she said we are back to the drawing board to figure out what is going on. I also had his pediatrician call today to tell me they got him an appointment for the developmental pediatrician that Jackson sees-on October 23rd.

With that said, we are going to the Mayo clinic in Minnesota. We don't have years and years to figure out this stuff and in hopes that some day we will have a diagnosis. In the meantime he needs proper help. Will let you know more about that as it develops. I spoke with them today and they have appointments booking into October and November. It will include traveling-but we have to get him the right answers.

Parker also had feeding therapy and OT today. It went awesome!!! He can eat pudding and graham crackers for right now. I just have to watch him and when I see him making gurgling sounds or he seems tired-we have to stop because he is getting tired, which in turn makes his muscles stop swallowing correctly and that can be dangerous. He also made his first sign today. I cried in therapy because we have been working so hard on that. He can understand what we are saying to him-but I need him to tell me what he wants and needs. He signed "more" to the therapist when he wanted another bite of pudding. It was great. Then he signed "more" "eat"-I was so proud of him. I have to work on it with him-when it was my turn to feed him he cries because he knows I will just do what he wants. We will work on that. I know he can do it. So, I have to work on more basic signs with him so he can communicate. It was a HUGE breakthrough for him. For the time being he can have one snack a day of some pudding and half a graham cracker. At meal times when we are all together, he gets to sit with us as well and have messy play time with the pudding on his tray. Up until now, we haven't let him sit with us because he wants to eat so badly and it breaks my heart that he can't, plus I feel like we are being cruel eating in front of him. So we will finally have our whole family together at dinner time. Yeah!!!

Post Vacation Stress Syndrome

We had a great "home vacation".  We didn't really go anywhere-but it was nice to be together hanging out.  We had a fun 4th of July (we missed our 6th family member who was at his dad's enjoying the fireworks) but my sister came in for a week and my brother-in-law and his family came in for a week as well.  It started out crazy because we had nasty storms that knocked out our power-but then it was fine.  The bigger boys went to zoo school last week in the morning and I think they really enjoyed it.  We spent a lot of time at the pool and the park.  The boys had a good time in the sun.  It was really nice to have that time.  It's hard getting back into the routine today.

Jackson had his first eating therapy last week and it went pretty well.  The therapist thinks we will sail through the puree part of therapy.  We are also being referred to a place called Brains-which deals with the behavior aspects of Autism and Asperger's Syndrome.  Hopefully in addition to home therapy and that we will be in good shape.  He has his evaluation for preschool coming up next week.  They will determine if he will attend a private special education preschool or be able to go through the special education program through East Grand Rapids.  I hope it's through our school system.  We'll see.

I put a hold on Parker's therapy last week-we needed a break.  But, this week is insane with appointments.  Tomorrow is his genetics appointment-where I am hoping to finally have a real diagnosis on this neuromuscular stuff.  I ordered his wheelchair last week and when they asked me what color-I started to cry.  It's really hard-but it is necessary.  Anyway-I do have good news to report.  He was bearing a little weight on his legs yesterday.  He was supported on an ottoman-but his feet were on the floor and he was definitely putting some weight on there.  I was so happy.  We took some pictures-this stuff is a really big deal.  Wednesday Parker has his eating evaluation and then I have to hurry home because our home therapist will be getting here right after that-he will be tired.  Thursday Jackson has therapy and then I have to bring him home and hurry up and get Parker back up to the hospital for PT.  Will be a very busy week.

And, of course if is my special boys birthday tomorrow.  Austin will be 8 and Jackson will be 3.  Big day!!

Sleep Study

Parker's sleep study went pretty well. I won't know the results for several weeks. He wore himself out when the tech was putting all the leads on. He had them on both feet, his chest, two belts around his torso and chest, five leads on his face and about six on his head. Then she wrapped his head up and he looked like he had a head trauma because he was all bandaged up. He also had two canulas in his nose-one for oxygen and the other one measured his carbon dioxide levels. He was NOT happy. So, when she was done I rocked with him a little bit, but he fell asleep pretty quickly. He had a pretty regular night-he slept through, but he wakes up crying a lot during the night. She had to come in a couple of times, but I don't really know what she was doing-fixing something.

We were able to leave at 5:30 the next morning and I had to hurry up and get us home so I could shower and have a lot of coffee. We had to be back at the hospital at 8:30 for his speech evaluation. That was an hour long-she said the same info. Cognitively he is between 11-15 months. Everything else he is around 10 months. So-we will see her once a week as well.

I asked the girls at the front desk to help me come up with a good schedule so I don't feel like we live at the rehab department. Jackson has to be there twice a week for an hour each session for OT and feeding therapy. Parker has to be up there for PT which is 45 minutes, OT which is 45 minutes, feeding which is half an hour, and speech for half an hour. So-I need to work something out. This is summer and I want to spend time with my boys doing fun stuff-especially since Austin is on summer break. I don't want us to have appts every single day. It will be more when the Early On people come during certain weeks in the summer as well.

I am really looking forward to our family vacation in a couple of weeks-we aren't going anywhere but we have all the boys and Charlie has a week off. We have another week like that in August-so we really need some quality family time. I am thinking that we won't even do therapy during those weeks. I do mini therapy sessions three times a day in addition to all these appointments-so they will be getting some work done.

Today I am going to work with Parker and the stander-not sure how it will go. I think once he realizes he is safe he might be ok. I am going to "trick" him and distract him with a Baby Einstein dvd while he is in it. She wants me to do it twice a day for half hour each time. I will post a picture of what this thing looks like-he may not look very happy, but some of you guys have asked me what it looks like.

Medical Equipment

We got our stander for Parker today. He hates it-but it is necessary. It just breaks my heart when he cries and screams. He stands in it and he is strapped around his legs, torso and there is a head support. We also got a table that is adjustable so he can have toys on it. Plus-she said down the road to school-the kids use them to do their schoolwork, so if he is still unable to walk-he will be in it during school hours. If all goes well during the next month and he can adjust to it, our PT is going to write a letter for medical necessity for us to purchase one.

Monday was our first PT appointment that I stepped outside and waited. He did really well. He acts up when I am right there-they got a lot done on Monday. She said everything is all set and we are just waiting on Airway Oxygen to deliver our pediatric wheelchair. She ordered one that is a little more hip and it looks a little more like a stroller. I am having a really hard time with this. After our appointment we went to get his first pair of real shoes-she wants him to wear shoes with really good support when he is in the stander. It was my first encounter with someone stupid-and I left in tears. She was talking to him and told him he needed to get out of his stroller and be a big boy and stand up for her. I was explaining that he cannot stand up or talk back to her for that matter. She wasn't getting it at all. That was hard. I am having a hard time with other people's reactions to our medical equipment and how they treat and look and Parker. I am determined to give him everyday experiences and go out and about-which means we will be out using the wheelchair and going on walks outside with the stander. I need to adapt a hard shell for those people.

Anyway, they moved his sleep study up to tonight-so we are off in about an hour. We have to arrive at 7:30 tonight and they will hook him up to a bunch of leads while he is sleeping. I called today just to make sure this is necessary-and Dr. Schuen said yes-he doesn't think that Parker can maintain his oxygen levels when he is asleep. I'm not really sure what they do to correct this if that is the case. It takes about seven weeks to get the results back. We have to spend the night in the hospital (which is why I think I really don't want to do this) and we can leave around 7am. I am praying we both get a little sleep, because he doesn't do well in that environment at all. I don't know if that will affect the results or not-but hopefully it will be ok if I can hold him for a while until he falls asleep.

I heard from Austin this morning who is in Disney World with his dad and he is having so much fun-I miss him. I will be picking up the boys on Friday and we have a day planned on Saturday at Michigan Adventures for the big boys-they have so much fun and we have to do stuff like that without the babies. So, my mother-in-law is braving the waters and watching both of them on Saturday. Yesterday our biggest little guy turned 8-Happy Birthday to Noah. We plan on spending the day on Sunday at our pool club-the boys love spending the day in the sun at the pool. So, if we can get through the next couple of days it will be fun. Charlie will be out of town in Indianapolis tomorrow until Friday night. I will miss him-but we have a fun family weekend planned.

New stuff

We had PT yesterday and we discovered that Parker does better when I am not there. He was so upset and wouldn't even look at her. He cried and turned towards me and she even backed away and just had me working with him, he cried the whole time. So, I brushed him and then once I got him calmed down-I slipped out of the room. The door was closed only enough where he couldn't see me, but I could see him. He fussed, but allowed her to comfort him. They worked well for another 20 minutes. So, from now on I will wait outside the door while she works with him.

We also had labs and kidney clinic yesterday. His labs look pretty good-potassium is a little high, but we are watching it. We talked in length yesterday about everything going on. She wants him to be checked out for Mitochondrial disease as well. This is a disease that affects the powerhouse of his cells and could be causing a lot of the fatigue and developmental delays. So-I'm not sure if that is what the geneticist is going to address, but we have some tests to do for that. It can also affect the kidneys-so we'll see. It just doesn't stop. We go back next time for our next ultrasound to see the anatomy of the kidneys. Once they stop growing-we will have more of an idea about his transplant. Even if they have more cysts each time-as long as they are growing he is still ok.

Today we had OT and his video swallow study. He did pretty well with OT, it's not as stressful as PT. His swallow study showed that he is still aspirating liquids. It went right into his airway. But-I am so happy that he can eat some baby food. We have to go slowly, but we are going to try it and see what happens. I have to thicken it up with the thickening powder, but he gets to eat....finally. I can give him half of a jar at a time and very slowly.

I have been trying to get the Pulmozyme medication covered for him because he needs it for his lungs. I got denied by our insurance and I did some research and found out that the company has a department for people like us. They are going to help us get the medication. I have to do a bunch of paperwork, but hopefully they can ship it on dry ice by next week. I am worried about him getting sick from doing the swallow study today-so I need them to get us this medication quickly. Plus, a bunch of phone calls to insurance and our medical supply company and a bunch of headaches with that.

Right now, we are waiting to get into neurology to evaluate the low tone, do the muscle biopsy and see about the mitochondrial disease. We have our geneticist appt next month-so I'll let you know how it goes.

Therapy

We had a very rough therapy session this morning. Ms Beth tried again today to get Parker up on to his knees to play and to help him stay there. Didn't go very well, usually doesn't. Then she had him in this crazy walker contraption that strapped around his torso and held him on this seat to be in an upright position. She had the no-nos on his legs to keep them straight. He totally slouches to the right on that whole side of his body. She said there was nothing firing in his muscles-no reaction at all. She is very worried we are looking at the neuromuscular issue and said today she doesn't think he is going to be able to walk-or put weight on his legs. This is much more than low tone. Based on other children she has seen with what we are looking at with the diagnosis we are facing. She is ordering us a medical stroller with special adaptations for his needs to be not slumping to the right. We are also looking to get a stander-which he stands in, but is completely strapped into. Then, maybe if he ever is able to put any weight into his legs and glutes we may be able to graduate to the walker that he sits in-but probably not a regular walker on our way to unassisted walking. Based on the reports from all the specialtists-still waiting to get the official diagnosis from the geneticist. But, today it isn't looking very good for Parker. I had a feeling in my heart that this was more than just low tone and I am crushed right now. I will continue to help him fight-but he is weaker than he was before and it is reversing-just in his lower body. He is still very weak up on top-but this also includes his diaphragam which is what is making breathing so difficult for him. He can at least drag himself around using his left arm and right elbow. She said he should have a standing relfex well established by now-even if he couldn't use it, if it was just low tone-there would be some reactions in his muscles. I want to thank my mother and my mother-in-law for cheering up my day today. My mother-in-law brought me Chinese for dinner tonight. I had no energy to do anything tonight, so it was going to be chicken nuggets for the boys. And she also brought me flowers to plant. My mother called my hair salon and made me an appointment for tomorrow to get my hair done. Thank you.

Divine at Work

I just want to say how much God does work in our lives. We were downtown at the hospital for Parker's therapy and he is sick today and was supposed to have PT and OT. We barely got through PT today and I left and didn't do OT-they were fine with that. I have never left therapy early, but today Parker isn't feeling well. I got a phone call a few minutes ago from my mother-in-law who works for the local tv station and she was worried about where we were. A helicopter just crashed onto the top of the hospital where we just were. Talk about divine intervention. I hope everyone is ok and they are moving patients around. It gives me chills that we escaped harm's way-in just a difference of 15 minutes. God was definitely watching over us today