Friday, February 28, 2014

Cross posted from Jacob's blog Casts and Phenol and more updates State Fair Pictures

It has been over a year and a 1/2 since Jacob received his last round of botox and phenol injections together. The hospital we had it done at could not longer have the phenol compounded. In December his physcial medicine doctor moved out of state so we had to find a new doctor. He received his last botox by his old doctor on September 26. The botox alone never seems to do the job anymore. A new hospital opened up in Orlando, Nemours, so we decided to try them out. We started seeing the physical medicine doctor there in October. Our old doctor wasn't to into bracing and understood Jacob's intolerance to oral medications for his plasticity. Everything you give him puts him to sleep for 18 plus hours a day. Without the help of phenol his legs have become more spastic, stronger, and started to scissor again no matter what I was doing to prevent it. His legs are so strong he fought night splints to the point of either getting them off or making them cut into his legs. We went though several different types from off the shelf to custom made.

The new doctor wasn't a big fan of jumping into phenol and botox together. I was elated to find out they were capable of doing it at this new hospital though. She wanted us to try dantrolene orally 1st. She thought it may cause less side effects than baclofen. Currently he was only taking 10mg at night time because any daytime dose would knock him out for the day. I wasn't very happy about trying this new medication because it came with a risk of liver issues. He even had to have blood work prior to starting it. Then there was a fight with insurance to pay for it and a pharmacy to compound it. After a few months of trying to get this medication 1. It didn't near nothing for his tone. 2. He slept worse than he did on the baclofen. He barely work up for 2 days and we had not even tit-rated to the full dose yet. I email them back asking to please go forward with what I know works. We are going into the time frame that we can do injections since you have to wait 4-5 months from the last dose to do it again. About 3 weeks ago we took him into the hospital and the doctor did phenol in 2 different areas of his legs and botox to his arms and hands. I was very surprised at how well the botox worked in his hands. I have never seen it work that well without phenol. I didn't want phenol in his arms this time because it makes them to weak. On his legs come apart nicely, but unfortunately his hamstings are still tight even after the phenol. In the past he had botox in his legs as well and maybe that is why we did not have the same good results this time. He had the start of a contracture behind his knees because he likes to keep them bent even when sleeping which like I mentioned before he has never tolerated night splinting. So she wanted to do casts on his legs for 2 weeks. I was worried about this because I know how very sensitive his skin is and how easily even his braces that come on and off and cause him issues. I was reassured by the Ortho techs that they do this all the time and they take them off every week, how well they are padded etc. I let them put the casts on thinking it is in his best interest. I don't want the contracture behind his knee to get worse. 

So the casts are on both legs from toes all the way up to the top of his thighs. I'm freaking out at the loss of control to take these things off when he is crying. I really haven't allowed myself to think this though I don't think. I take him home and withing 2 hours of the casts being on he is fighting them mad as hell. I literally have to carry him around and hold him the rest of the day that day (Friday) for him not to cry. He slept on top of me all night. If he felt me move him and take my hands off of him he started crying. I did start giving him a morning dose of baclofen (it is prescribed at night and PRN every 6 hours as needed) to help him not fight the casts. I had also given him extra valium (also prescribed the same as baclofen) I had even given him a few doses of the course of 3 days of ibuprofen thinking it would help with anything muscle pain (Ill get to why that is important in a minute) Sunday I really started freaking out about not being able to see his heals. He has never ever had a pressure sore, but I know in his DAFOS (which of course are only worn with socks) the way he braces and pushes down he can make his heals red so I am worried about what these are doing because I know he is doing everything he can to try and push out of these. I considered going to the ER and having them cut cast windows into the heal part of the casts to ease my concerns and talked myself out of it. Thinking I know how much padding was between the hard part of the casts and his foot plus I didn't know if they would even do it just because I wanted them to. At this point by Saturday afternoon and Sunday he was back to his happy giggly self only crying when he needed his legs repositioned. He went to school and therapy on Monday and seemed fine, but Monday night he cried a lot but stopped everytime I changed his postion. I sent him to school on Tuesday. A this point I had already made arrangements to have the casts cut off on Thursday and made the decision that I was not putting him or myself though a 2nd week of this. I can't stand not being able to see his skin. The school calls me a few hours into the day saying he as crying after his feed and they vented his tube and got a copious amount of rust colored fluid back that appeared to be blood. I called his GI, Nemours (he had started a new drooling patch and I wanted to make sure that it was not a side effect I didn't know of) and his pediatrician waiting on someone to call me back before I took him to the ER. I pick him up and arrange baby sitting for the rest of the kids and I am about to head toward Arnold Palmer in Orlando when Nemours finally calls back. She suggests that I go ahead and bring him in to have the casts cut off and they can test the fluid for blood and call our GI and see what they say. I told her I was upset because I thought he was crying over casts and never thought to vent his tube and that  I just wanted them off. So I head to Nemours. They are waiting on me to get there (I really do love the nurse there!!) They cut the casts off and the 1st thing Jacob dose is bend his knees up to his chest and laugh like he just won. As we start dealing with the GI issues and figuring out why he would have blood in his stomach the nurse asked if I had given any ibuprofen. As a nurse myself I should have realized, but it didn't cross my mind, I had given him a total of 3 doses of Motrin since Friday the last being Monday morning and this was Tuesday afternoon though. After discussing the GI I was told to just watch him and not given anymore Motrin. He has been fine since on the GI issues...back to the legs. 

The more we sat there waiting on GI stuff the more color Jacob showed in his legs. I was watching his left foot mainly because I noticed his heal looked like it had a white area at the back of it.It seemed to blanch okay though. Then shortly before leaving I looked at his right heal again and OMG how did I miss this he had a nickle size purple area to the back of his heal from the cast. (the right leg is the stronger of the legs and the 1 we have to most issues with) I am so upset at this point. I feel so guilty for letting them put the casts on and not listening to my own intuition on Sunday about having the heals of the cast cut out. I can tell they feel bad as well. We make a plan on how to deal with it. I try not to cry. As of right now the heals are not looking as bad as they did on Tuesday. Today is Friday. They were afraid the right one may open and so far it has not. They look like blisters but have not raised. We are keeping him in keep immobilizers as much as possible and keep is heals elevated off all surfaces. She said no weight bearing either. We go back on Tuesday March 4th for her to reevaluate his heals. He is defiantly happier without the casts and is tolerating the knee immobilizers fine.
The day we got the casts

This is how he slept the 1st night. I was not allowed to put him down.

Jacob's victory of getting the casts off.

I ordered Jacob a bigger special tomato chair as well. We went up from as size 2 to a size 3. The size 2 still fits, but is much easier to get him in and out of the 3. I also wanted to 2 anyway so  I can use 1 in his new stroller Advance Mobility Liberty. It fits well. It is nice having 2 so I don't have to constantly move them back and forth to. I have 1 that I can keep in the car for when we go out places. I really love the speical tomato. The straps they built into it are very handy. We use it in the back of shopping carts, the front of some shopping carts like the 1 that are cars, it fits inside like an insert in the special needs swings at the park so he does not bang around in it. On a few ghetto occasions even though this is probably not 1005 safe we have even rigged the seat to a standard swing at the park so he can swing to when they have no special swings. It fits in his stroller for better support and it comes out so he can sit in chairs at restaurants or friends houses. They way he arches and thrusts. It is important that he has something that can stop him from bucking out of things. Still 1 of my very favorite things I have every bought him and I am very happy to have 2 now.
The NEW chair!

Mine and Jack's attempt at building a platform swing. We built that a few months ago.

Another thing we have been looking for is a new carseat for him that didn't push his legs so far forward that he was able to kick the back of our seats. His previous 2 carseats Britax Frontier and Graco My Ride 65 (Loved the My Ride) were good but the recline on them made it to where his feet were at the perfect height to get stuck in the pocket on the back of the seat of our van. Without making the driver uncomfortable and sitting 2 close to the wheel there was no way to fix this. While at Nemours a few months ago back when we 1st started going we were having a wheel chair adjustment and he was being fitted for a new Rifton stander that we are trying to get we discussed carseat options. They told me about a program called Safe Kids where I can get a discount carseat that may work for him. ($100) It is not a special needs carseat but I figured wer would try it. It is a Diono Radian R120. I had another special needs mom recommend it to me as well and for $100 bucks I decided why not. They normally retail $250. I had actually owned 2 of these type carseats before when they were called Sunshine Kids but ended up getting rid of them (silly me) They are good for 10 years!

From the website:
With all the key safety features that parents love in the Radian® family, the R120 model is a step up from the R100 and provides additional infant body support cushions to help keep babies and infants positioned correctly.

Key Features

  • Full steel frame and aluminum reinforced sides for unmatched safety
  • Comfortably seats rear-facing children from 5-45 lbs, forward-facing children from 20-80 lbs in a 5-point harness, then converts to a booster for children up to 120 lbs.
  • Unique SuperLATCH system that makes installation easy
  • It also fits 3 across in a mid-size vehicle, folds flat for travel and is FAA certified
  • Booster mode from 50 -120 lbs (40 to 57 inches)
  • NCAP crash tested, the industry benchmark for verifying child seat performance in severe accident condition

 His carseat also the day he got the casts. We do have to roll a towel up and put it on the left side to stop him from leaning.
This was his yesterday at Nemours again having his hand spints readjusted.

Took the kids to the state fair a few weeks ago. I was surprised at how much Andrew wanted to go on the rides. I expected him to freak out on me, We went with some friends and had a really good (expensive) day. 
I love this picture. Jacob was very engaged while around the animals. He really enjoyed it.

 Daddy let the cow eat her hand.

 This was Jacob's favorite animal he seen. Then the sheep he was staring down.

 Ava milking the cow.
 We had to force Hannah off this ride.
 Andrew enjoyed this, but didn't milk the cow.

 We updated the kids equipment in the backyard and put together a new swing set this past weekend and the weekend before that we put together the new trampoline. Now they have a trampoline inside and outside again.

Sunday, February 2, 2014

Merry Christmas and Happy New Years...and now it is February!

Okay I have been writing this for about a month now and never seemed to get this post is February now so maybe I will finally get this posted. Children keep me busy and not much time to sit down and actually write. I had to hide in the room to finish Logan's post the other day.

Figured it was about time for an update. Never thought I would be one to go months at a time without writing anything. Truth is our lives are pretty boring and nothing interesting happens to often. I'm not going to read back where I left off last so lets just talk about what has been happening lately why don't we?

Lets start with Jacob. Recently he had a new swallow study done after doing intensive speech/feeding therapy to determine if he can have "tastes" of food safely for now while we continue to work on decreasing his oral aversion. Happy to say he passed! The down side to all this is that he has has started drooling. A LOT! He has been drooling so much he chocks on his secretions. We started him back on Robinal. He took this when he used to be able to eat before, but hasn't been on it in almost 2 years, he still drool, but it helps.

We also had to switch to a new physical medicine doctor since his previous doctor is moving out of state. We are started him on a new medication called dantrolene for a few weeks to help with his tone, but it didn't do much besides put him in a sleep coma so we stopped it.. His legs are getting pretty tight again. He fights all braces we put on him to help stretch his legs. We are scheduled for a round of phenol and botox on March 11th. He has also been fitted for new hand splints, knee splits and we are going through insurance for a new stander since he is out growing his old one, and new parts for his wheel chair.

This is the best news yet...I'm not really sure what has prompted the change, but we started out patient physical therapy, occupational therapy, and the speech therapy in August. My biggest concern outside of the obvious issues of hand control, feeding, and physical control in general was his inability (or unwillingness) to stay awake and partake in any kind of activity that did not involve him sitting in front of a TV or Mickey Mouse Club House being on. Over the course of the past few months, not only has he been AWAKE during therapy, he has done so without any TV or music being on and showed some level of alertness to what is going on around him. He follows a few commands (mainly when he feels like it) and laughs and giggles. It started out with me having to have Mickey Mouse on in the van to keep him awake to get the therapy before school and then he would crash at school and sleep all day. Now he can be listening or watching anything in the van and stay awake, make it all the way through therapy, and recently the school has reported he is not taking naps at school and is showing the same level or alertness and craving attention. I am loving it, and hoping this continues to evolve into him showing higher cognitive function when it comes to prompting him to do something like switch toys, yes and no questions, etc. I truly believe he has the ability, he just has to channel it.

Now I will move on to Andrew. He also started therapy in August/September for his Sensory and Speech issues. I have not seen the improvements I have hoped for. If anything the therapy center is giving him the sensory stimulation he is craving and it is making his behaviors worse when he can't have it all the time. I notice his behavior is worse after we leave therapy. He is showing some improvement in hand strength and his ability to draw some shapes. Which brings me to my next point. As I mentioned before I know there is something going on with him and he needed help and everyone is brushing it off. We finally got the help we were looking for a B.S. diagnoses of Disruptive Behavior Disorder and just some umbrella diagnoses of Sensory Integration Disorder and Developmental Delay. I decided he needed a 2nd option (not sure it will help anything except maybe insurance claims) so I have been working on trying to get him into see a neurologist for a few months now and FINALLY got an appointment for January 9th. *update* We seen the neurologist and and she diagnosed him with PDD-NOS (Pervasive developmental disorder) This is an autism spectrum disorder. She also diagnosed his hypotonia. He has since started physcial therapy twice a week since I started this post and is waiting for a CT scan to check the white matter of his brain. The boys will be FIVE in July...that means he is suppose to start KINDERGAREN this fall.  I am not sure Andrew can function in a normal classroom at this point unless some major maturing happens between now and then. I have to spoon feed this child like an infant to actually get him to eat something besides bread or pediasure.

Andrew struggles to hold a pencil/crayon in his hand correctly and make it form any sort of shape. He can not color a picture without gripping the crayon in his fist and just scribbles all over the paper. They have been working with him on cutting out shapes on paper and pointed out he does not understand the safety part of it and will continue to cut right on to his fingers where he is holding the paper (yes he has cut his fingers to the point of bleeding more than once) He randomly falls when walking due to his low tone issues, he continues to want to "W" sit no matter how many time I correct him. He even jumps on the trampoline like this with his legs bent in a W shape. I worry about his ability to keep up with the class due to these fine motor issues he has. Ava was expected not only to write in kindergarten, but form sentences. On the other hand, he probably knows more than his sister did starting school. He has mastered, his colors, and shapes by sight, he recognizes most of the letters of the alphabet, but can't sing the alphabet. He can count to 20. He also has a major tablet addiction. We bought him a Kindle Fire last Christmas and it is still his favorite thing. It does amaze me how they figure out how to navigate and play the games though without being showen or told.

I home schooled Ava from August until the 2nd week of October. At that point there were a few concerns that made me feel uncomfortable with my decision to keep her home with me. 1 was the curriculum we were using. It was 1 that was given to me by the state and she was still considered a "public school student" but the work even going into October was mostly stuff she had learned in kindergarten and was all mainly review, while some of her friends who were at the school she left were doing things far more advanced than we were. For example Ava's spelling words were cat, dog, led, met etc while the same week at the public school they were bread, spread, shed, could etc. Same thing with math just seemed like the curriculum was moving to slow, yet at the same time it was taking us FOREVER to get through the day some days because I couldn't get Ava to pay attention. She just constantly asked me if we were done barely an hour into the day. There were typically 4 subjects that were suppose to an hour each and sometime we would spend almost 2 hours on our language arts because she whined and complained about me making her read. There was lots of crying, yelling, whining, and tears shed by both of us, and it was just not a good learning environment. I cried like a baby in the guidance councilor's office and expressed my concerns for while I kept her home in the 1st place. They ended up putting her in a class with the best teacher. I absolutely love her and she really seems to like Ava. She is also in a tier 2 program where several times a day when the other kids are getting busy work when the teacher is doing small groups or 1 on 1 she goes to another area with a few other kids who are struggling and get more help. Considering She was thrown into school and they were weeks ahead of her I am very happy with how far she has come and so is the teacher. Her interim report right before Christmas showed her having 2 C, 1 A, and 3 B's if I remember correctly. 1 of the C's was a low C, but there were only 2 grades in that subject 1 was good, 1 was bad, and 1 of her B was 1 point from being a C. She had 2 weeks worth of grades following that report and nearly everything she brought home was an A or a B so I expect to see better grades if this continues on her actual report card. *update* Ava just got her 2nd 9 weeks report card in the academic areas she had C's in reading and writing and B's in everything else. I paid for the full version of to help with her spelling test since she can play games on her tablet and for the past 2 weeks she has brought home 100s in both her math and spelling (also upgraded the paid version of a math game on the tablet). I have a parent/teacher conference next week to discuss how to progress the rest of the year. I have hopes that I can have her go onto 2nd grade, but worry she will continue to struggle. She is definitely behind in reading.

Hannah is a wild child. She isn't even 2 yet and has by far exceeded what  I would expect from the "terrible twos". I bought a trampoline and put it in my living room in an attempt to get her to stop jumping on me all day. The plus side it also helps with Andrew's sensory issues to. No living room should every be without a trampoline! **writing 2/2 now**She will be 21 months in a few days. I was really worried about her speech, but she has finally started putting 2 words together and saying new words in general. She climbs out of her crib almost daily now. She enjoys taking all her cloths and diapers off when ever she can get away with it. She is definitely a mama's girl. She completes our family and I am enjoying being able to stay home with her.

Jack got a promotion at his job. He is a detective now. The hours in general are better for our family. He is home every night and weekend now and off holidays. I get to stay home and do all the doctor and therapy appointments on my own. To fill my time I coupon and make boutique bows for fun and sell them on the side. Life is going by crazy fast, but has settled down to a routine. We do 1 to 1 1/2 hours of therapy starting at 8am every Monday, Wednesday, and Friday for both boys. The boys and Ava are in school during the week. After therapy it is just Hannah and me for a few hours. I use this time to get my shopping and errands done. I have also started trying my hand with a friend in converting/making feeding tube backpacks (still experimenting with this) Afternoon I have the kids on my own until Jack gets home then dinner and bed time. Our weekends are usually full of whatever fun things we can afford.

Jack and I have been working on weight loss for 4-5 months now with our primary doctor with his weight loss program. We are both down about 50lbs now and have quit a bit to go. I have tried to incorporate long walks and outside fun things on the weekends and make sure I get my exercise in during the day before the children get home from school.  Right now Jack and I are watching the Super Bowl and it is 1/2 time. (we recorded it so we are about an hour behind everyone else lol)

Godzilla trying to kill Rock N Roll Mickey Mouse in her trampoline. She also fed him boogers.

My Jacob and Andrew (and his best friend tablet) before school last week.

Jack and Hannah on 1/30 we went out to lunch after dropping of the donations for Oh My Baby in Logan's honor.

My baby Ava. She told me that morning that even though she was a 1st grader her teacher said she is almost a 2nd grader and she wanted me to take a picture of her being almost a 2nd grader. This was also 1/30

I took both these photos 5 years apart on new years eve. The point was to show how much fatter I got after the triplets and as a point to show my weight loss. The one on the left was new years eve before the triplets were conceived. The on on the right was me (slightly drunk shh) about 25lbs less than I was 5 years ago and continuing to loose. This years goal is to double my weight loss and loose 100lbs this year. I was wearing a size 28/30 pants 5 years ago and up until a few months ago flucuating between 26/30 Today I can fit 24 comfortably and can squeeze those 22 on lol (I haven't wore anything smaller than a 26 since 10th grade or so what year would that have been???2000ish

1 of the bows I made.