Jacob's newest accessories

I bought another stroller today.  I seen a Maclaren Major on Craigslist and I couldn't help myself. I have to try everything.  He fits decent without an insert, but I will definitely need to buy the lateral cushions.  I love that his old size 2 special tomato sitter fits in it. I also like that I can make him recline a little more than he would in the seat itself by angling the sitter a little. I let him sit in the stroller about an hour after we got home and he did well.

I bought this for the summer so I don't have to lift his 62 lb wheel chair in and out all summer during our 3 weekly therapy visits. I might hate it next week like the convaid we tried..not that I hated that one it just didn't work for us.

Maclaren Major umbrella stroller with size 2 special tomato soft touch sitter.

I seen someone post a few months ago on Facebook about an idea for a bed for a special needs child. Well of course I needed that to. Searched on Craigslist and ta-da the Step 2 Loft bed I was searching for had just been posted for $75 2 hours prior. It was mine. mine. Mine! I really love this bed for now. Eventually we will work on getting him an actual hospital/sleep safe type bed, but as a cheap alternative for a non mobile child this is wonderful.  At perfect waist height. Makes late night diapers changes easier. His matress is thicker than normal because of the memory foam so we added a board that we cushioned "just incase" to secure the opening toward the floor.

STEP 2 LOFT BED
There has been talk of having a baclofen pump implanted. We met with a neurosurgeon. Jack and I decided that we are not at a stage where this is an option we are willing to consider. To many risks and complications.  If we keep him stretched and up in his gait trainer his legs are not so bad. He definitely could use some botox in his hamstrings right now but overall as long as we keep him weight bearing he is fine. He has been taking tons of steps lately. He walked across the distance of our small living room atleast 20 times the other day. He kept putting himself in the corner.

 Playing in mashed potatos and cottage cheese and licking it off his hands.

 Putting himself in the corner

My backyard water park lol

Jacob got a new Rifton prone stander

 Jacob has been a busy boy lately. He got this new stander. He also got ultraflex knee immobilizers and a new pair of AFOS and shoes. He went on his 1st roller coaster ride today at Legoland today. Also added some pictures of him at therapy in his new knee immobilizers in the cage. Daddy took him skating on Saturday at his sister's birthday party.

Rifton Corner Chair and a new hammock chair

Found this little gem on craigslist. Love it! This is a size small Rifton corner chair for anyone looking he is 43 lbs and 44 inches tall. Also bought him a hammock chair to hang out in while we are out side. It was around $35 on amazon.com

How to Convert Zevex Infinity Pump bag for gravity feeding

I took all this info from http://agirlandhertube.blogspot.com/2011/08/how-to-use-zevex-enteralite-infinity.html?m=1 just decided I would try it out and repost for those searching for a solution like this.
Very clever for anyone that needs to gravity feed in a pinch when a pump had no way to charge or breaks.

Casts, phenol, and pressure sores. Oy! New Special Tomato Chair as well.

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.

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I've been stroller shopping AGAIN! Advance Mobility (Baby Jogger) Liberty

I have a small list of expensive items I have been saving up for for Jacob...most I was planning on buying by income tax time depending on refund amount etc. I have been drooling over a Liberty stroller which I think I have mention on here before. I also need to get him a special needs car seat. I heard insurance does not pay for them, but we seen a new physical medicine doctor today (or old one is moving out of state) and she said she has seen them covered. So tomorrow I make an appointment for Jacob to see the seating specialist to look at his wheel chair and for someone to go over equipment option with us because he is starting to outgrow some equipment. We are for sure in the market for a new stander. Not sure if we will go with the Tumble Form 2 again this time.

While browsing Facebook special needs equipment sell pages I seen someone list a Liberty stroller. I was 2nd in line for it and the 1st person passed. I got it and I am REALLY THRILLED about it. It is bigger than I expected and is not tiny and compact like my single baby jogger city mini GT, but most of the features are exactly the same. Similar harness, same quick fold release in the seat, adjustable handlebar. It does have air filled tires so it rides better. It is heavier and more awkward to push as well, but I think that is just getting used to it. I was able to push it easily at the park through the mulch with 1 hand while holding my toddler with the other hand. It has more of a reline in the highest position and it does NOT lay as flat as the baby stroller do. It is still WAY BETTER than the Special Tomato stroller and much larger and better than the convaid we tried as well. Since the stroller is a little big for him he does seem to need some kind of side supports I need to add. Sure they make some for some high price...I will make my own.  He like to lean left. He did okay with the Snuggin Go Too insert, but that is a little to flimsy for what he needs.

My next purchase is to go up as size on his special tomato seat. I really LOVE that seat. It can be used in some many situations for a special needs child. I actually might use it as the stroller insert eventually when I have 1 to keep at home. We have had our special tomato chair for awhile now and if that thing was to break in 1/2 right now (I'd die) but would say I have well got my moneys worth out of it already. I use it for another special needs friend I take care of who needs even more support than Jacob so it is used A LOT.

*  We us it at the park in special needs swings. My little friend I watch likes to curve his back forward and will bang his head even in the swing at the park so the size 2 seat fits perfect in the swing to give him a soft secure place to swing.

* We use it in restaurants so he can sit at the table with us and also at home for when we try oral feeds.

* I use it in the back of shopping carts and if I am lucky enough to find the 2 seater shopping carts that either look like a car or just have the bench seat I am able to strap the seat to those since it has straps attached to it. This saves me a lot of grief from him constantly falling over in the shopping carts that he can still fit in and makes shopping much easier.

* We travel with it and take it to friends' houses even without the base it gives him a secure place to sit even if we place it in a recliner or the couch. Jacob is very active and kicks and wiggles his body to the point of making himself fall over and eventually end up on the floor if not strapped to something.

At our appointment today at Nemours in Orlando I was happy to hear the physical medicine doctor there Dr. Reid does PHENOL. We were seeing the doctor at Arnold Palmer and they have not been able to do phenol in a year. Jacob is not really at a point of needing phenol again right now. He has a few tight muscles but has full range of motion. We did botox on 9/26 and haven't notice any real improvements. I think he will need phenol again in the next 6-9 months though. I was really relieved to know I had it as an option again. I was ready to drive hours away for it. She was wanting to increase his baclophen again in which I told her no. I'm not a fan of my son being so snowed on meds he is asleep or 1/2 on conscience all day. Our medication routine is working okay. I would like to see him a little less tight, but taking away his alert time during the day is not an option for me. She mentioned giving him a new medication that I had never heard of I think it was Zanaflex.. She told me it was less sedating than Baclophen, but Dr. Google has told me otherwise. He also needs blood work on a regular bases to check for liver failure why on it. Not sure I am willing risk liver failure....but hell all the other meds have side effects too.

Free Diapers and New Leg Braces

Today was a REALLY GOOD day! From my understanding my son could not get diapers paid for by Medicaid/CMS until he was 4, plus he had private insurance until April 2013 and medicaid as a 2nd insurance and it was always a huge struggle to get them to pay for anything. Now my son has medipass and CMS and things are MUCH better and I have no issues getting anything approved (so far).

So, I called his doctor today. (He turned 4 a little less than 2 weeks ago) The doctor wrote me a script for 150 diapers a month and took it to a local supply place our CMS social worker referred us to. They were really great they actually gave me 180 diapers and chuck pads for him to use at night. They told me if I switched all of his medical supply needs over to them they would give me a free pack of diaper wipes for each case of formula he had. This offer is tempting, but not really in the mood to have get the scripts again at the moment. They will also deliver everything. Today I picked it up.

We have been trying for over a year to get leg braces for Jacob to wear at night. We tried 2 different knee immobilizer type advices and neither worked for him. So SOMEONE FINALLY LISTENED TO ME. Last visit with Shriners they finally said they would make use custom leg braces. He now has braces that go from his feet up to his thighs to wear at night. Hoping this will help him not need to get injections in his legs so much.

On a side not I recently read that children with certain qualifying diagnoses (in the state of FL) can get diapers paid for through insurance before the age of 4. So, I asked today at the medical supply place for a friend and they said as long as the child is on CMS they CAN provide diapers at any age with a prescription. Dang and to think I have been buying diapers all this time ;-)

They gave me 150 chucks pads and 10 packs of diapers in size 6 with 18 to each pack. I used the 1st one tonight. They seem kinda thin. They are definitely no Huggies, but hope they work well. They look comparable to me to the Target brand I buy when money is tight and I have no coupons.