Thankfullness 2014

I probably should be sleeping or cleaning since every one is sleeping but I am typing this instead. Since I have had children I am not too great at sending thank you cards. Please don't take it personally. I actually have some on my desk that I wrote out, addressed but never mailed. I don't really like my handwriting too much so this task is difficult. I have no idea if anyone can read my handwriting, if I got too distracted by something I might missed a word,ect. I really do appreciate everything friends and family for all their support towards my family. I appreciate everyone that was there to support us during the difficult time with our 2 lbs 2 oz baby boy, Abraham. People jumped in like we never even left and came back 2009. We also appreciate the support given when Glenn was deployed over seas for one year shortly after Abe's 1st birthday, the baby showers that have been given for both boys, the meals that families have prepared when I had a surgery in 2010 and 2011 and when we brought Abe home in 2009 and Luke in 2013. Also the trips to Seattle friends have made to support us when Abe had inpatient stays. We appreciate being able to stay at the Fisher House during Abe's many inpatient stays. Those that have babysat when I had medical issues myself and those that have agreed to watch Luke so I can give more attention to Abe at his appointments. We appreciate the nurses, doctors, other medical professionals (PT, OT and ST) and teachers that have helped maximize Abe's potential. I am thankful I have the education, knowledge and assertiveness to advocate for him or to find a resource to help me advocate for him. Abe often tests my patience limits and can be aggressive towards me and Luke but I am truly thankful that he is here. The aggressiveness really worries and concerns me. He is getting stronger, bigger and is actually 36 lbs finally at almost 6 years old. I have been praying that his aggressive, violent behaviors subside. What is interesting is he is a prefect angel for other people other than his parents and brother. I am trying to get his constipation under control which could potentially cause some of the tempers. I am also working on getting him ABA services again. I still need to fill out the paperwork for the new company. He is using sentences now and throwing in some sign language too. Other times he has a difficult time expressing himself. I often hear "I need to poop or use the potty" but it is an excuse to get out of necessary tasks like eat dinner or go to school. No idea what excuses he will have when he is a teenager. This week he saw neurodevelopmental ARNP. She was very impressed with his ability to sit on the exam table without a lot of support. I was so worried about the surgery because it involved cutting nerves in his spine which can not regenerate. Over all we are very satisfied with the results and have no regrets. The only difficult part is managing a very busy toddler at appointments. I don't blame him it is probably very boring for a sibling especially at the medical appointments at Seattle Children's. It is   not the norm to have a 2 hour round trip commute. Most other toddlers might attend a play date, go to story time at the library, stay home with a caregiver most likely the mother, then eat lunch and have nap time. The only regret I have about the surgery is I wish we had done it sooner but Abe did not show the criteria that was necessary for it. Seattle Children's does not just preform this procedure on every kid with CP and tight muscles. I absolutely don't regret having a second child but it is a lot to manage. When the boys mature and get older it will be easier to entertain them at the appointments. On occasion Luke is part of Abe's PT sessions. It's actually pretty cute at Mary Bridge when Abe rides the trike down the hall ways and Luke runs in front or behind him. It is still a commitment on my part as a mother to drive him to and from all his post surgery PT appointments.He still requires the muscle relaxer Baclofen but only once a day now instead of twice a day. He seems to be getting stronger every day. I finally got him to ride his trike last weekend. Since he crashed it in September it was difficult to convince him to get back on it. He is willing to ride a trike at PT sessions but not at home. I probably should get some sleep now. There is a lot more than I am thankful for that I am sure I will remember right after I hit publish on this.

Advocating never ends

I am thankful Abe is doing so well now. He is getting stronger, able to pull himself to a standing position again. He started using a reverse walker although he still needs to build strength for this. The decreased PT to 3x a week instead of 5x a week has helped the family. I am able to make real food on occasion, although dishes and laundry are still backed up. Abe seems to be adjusting to school better now too since he is there at least 2 full days and half days the other 3 days. I finally got the Paratransit Services situation taken care after having a long telephone conversation with the regional manager. He was very helpful and kind. Last week I spent my time figuring out why his Medicaid coverage would be terminated at the end of the month. I made countless phone calls only to just end up getting no where. One lady even hung on me, I even heard the phone slam down. I was not yelling or being mean. I just was explaining who I already talked to and what exactly I needed to do. The mix up was because his DDA case manager had his coverage transferred to another program so he can receive the 80 hours a month of personal care. She had no idea it would be this difficult. I opened the letter on Sunday and by Thursday morning I called again and was told it was changed over and he won't lose coverage. This has been a huge blessing for us because the cost of all his medical care adds up quickly, the fuel, bridge toll, for those of you non Washington people the bridge toll is $4.50. This does not sound like much but when you drive over it 3-5 a week it adds up quickly. This is the discounted rate too, if you pay by mail I think it's $6.50 and if you stop at the toll it is $5.50.  If in the Washington area, anyone reading this is interested or knows someone interested in providing care for Abe he qualified for 80 hours a month of personal care. The person has to be over the age of 18 however. Since we lost respite care upon military retirement this would be nice to have. Back to the title, advocating never ends. I got the Medicaid stuff situated finally now to get him ABA service back. You would think getting ABA service for your child with Tricare insurance it would be simple especially since he has received it since summer 2012 from the same company but it's not. I had to make lots of phone calls to the autism case manager with Tricare, the ABA company and email the provider at Seattle Children's Hospital plus make an extra trip to Seattle for Abe to have IQ and Vineland testing done. The Seattle Children's Hospital physician confirmed an autism diagnosis. When a family retires from the military they lose respite care and ECHO (extended health care coverage) for their special needs kid. A few years ago ABA was not offered to retired military families but parents put their feet down and now it is. Since Abe has Tricare and Medicaid, the ABA company has "limited availability"  and he is on a wait list. I understand companies need to make money to pay their employees, pay for the mandatory health insurance, ect but if a child has a medically necessary need then it needs to be met. I did hear that a lawyer is working on cases for children with autism and Medicaid coverage. Not specifically for my son but for every autism child that has state insurance. Tricare authorized ABA services however I don't think the company wants to take him on as a client again because legally they can't ignore and not bill both insurance companies.  The ABA company did not verbally nor in writing share this information with me. When I tried to get Abe the testing that Tricare requires  for retired military families to receive ABA therapy at CTU in Puyallup since he is an established patient with PT, OT and ST they would not able to because of his Medicaid coverage specifically saying we legally can't ignore that he has the coverage but if he only had Tricare we could schedule and test him. I assume laws that apply to one facility apply across all medical facilities and services. A case manager gave me a long email of resources to advocate for he gets ABA services again. So I have another thing to spend my time doing research and advocating for Abe. He probably really has no idea what I do for him. There are days I wish I could just have a normal life and not spend on my time making phone calls, sending emails/texts and typing out letters all to maximize his potential. I know parents have to advocate for their typical kids but you truly have no idea what advocating for a medically complex kid is like until you have done it. Abe will see neurodevelopment this month and orthopedic surgery next month. His hip is still sublaxed. I really don't know if surgery would be warranted or not right now but based on his x-ray he will be seen in December instead of March which is the next availability. Not sure if this is good thing that the doctor is wanting to see him now or if it's because he is post SDR surgery. On a positive note I asked if appointments can be combined at Seattle Children's and they called me today to schedule both rehab and pulmonary for the same day and although it will be in February instead of January, only one week later than they offered I chose the 11am time so I don't get stuck in 3 hours of traffic. Hopefully it won't take 3 hours to get there but I assume most people would be at work by 1045am so we should be fine.  I still plan to add extra time just in case.  We will plan to combine neurodevelopment and neurosurgery on the same day too if possible. The neurosurgeon felt his VP shunt is functioning well enough for an ARNP to see him for his next annual MRI and reprogramming appointment. His shunt is almost 6 years old but still functioning well. Eventually he might require surgery for a new one due to failure and growth. I heard it's rare for it to function this long without needing to be replaced. We have a lot on our plates right now please pray that his shunt continues to function well and no surgery is required. Other children are frequently having VP shunt difficulties and are in the hospital for it. Seattle traffic in the dark and rain just stresses me out and I really don't want to do it again. I thought I could handle 8am and 9am appointments but not if it takes me 3 hours to get there. We only live 1 hour 20 minutes away with no traffic so with traffic it doubles the time. Thankfully we are safe and Luke only screamed at the appointments and the last part of the way home. I think if he screamed the entire 3 hours of driving my stress level would have been worse. Nope  he slept most of the drive. Driving to Puyallup and Tacoma is nothing like driving to Seattle. I recently looked at the mileage to Poulsbo where he used to have PT, OT and ST and Tacoma is actually a few miles closer. I should sleep my family has been sleeping for over 2 hours now. Luke woke up a lot last night too.

Doors

I should be doing the dishes since everyone except me is sleeping and it 's only 8pm. I considered deleting my blog today too, all of it from day one. Some day I may want to look back on it and see how far Abe and my family have come. It might help or inspire other people, it may give someone with a child in a similar situation a ray or hope or it might just flat out offend people. It's from my heart and what is currently happening in my family. What is occupying my heart, mind and soul at the time. I decided it's probably not the best idea to completely delete. I felt compelled tonight to write this entry about doors.  Abe has had his power wheelchair since summer time. We have had a few set backs with it especially during his inpatient stay. ABA worked tremendously hard to motivate him to drive it. The title of this entry is "Doors". The reason behind it is Abe has a huge aversion towards driving his chair thru doorways. He often verbally says "I need help", "help me". This is fine when there is an  automatic door that is wheelchair accessible that I can quickly press a button and it opens back up. However at his school we have to maneuver through two door ways. The external door way has two doors but is separated by a metal divider and the internal doors both can open. Luke is now one years old and I often put him in a Tula baby carrier I borrowed on my back so I can use both arms and legs to hold the doors open. I can't be chasing a busy toddler and help a 5 year old that does not feel comfortable driving his wheelchair thru door ways or onto or off elevators. The Tula or Ergo baby are truly necessary for me right now and I am so thankful to have the option. I heard on Spirit105.3 last week about a high school senior with cerebral palsy doing funding raising so his school would automatic doors for children in wheelchairs.  I really don't want to copy his idea but I thought wow how awesome would it be for all the children in wheelchairs that attend Abe's school for an automatic door to be put in.  The senior in high school had people donate $20.00 for a ride on  his wheelchair. He raised enough money for it be purchased but will graduate before it is installed. Abe is only in kindergarten right now so if this does happen then he will benefit. If you have seen me struggle to hold the doors open and help Abe drive his chair into school while trying to make sure I don't hit Luke into the other side of the door you would completely understand this request. Some times someone is available to help us but most of the time there is no one because we typically arrive during the school day. Eventually he will gain the confidence and maturity to drive himself thru doorways but when he does sadly he will still require someone else to hold the door open for him since they are not handicap accessible. This will make him still dependent on other people as well as all the other children in wheelchairs. I mentioned the idea of automatic doors to assistant director of special education but all that was probably was heard is "this cost too much money, this cost too much money". I assume that's all that went to his mind, I really have no idea. The topic was quickly switched. Most likely true because these doors probably require maintenance beyond a typical door. Also during a lock down could it be properly locked to prevent a bad person from entering the school? I have no idea if we did the fundraising if the school would even consider it. It's probably been needed for several years but sometimes it takes a loud parent to make things happen.  I am open to ideas and suggestions about this. Especially from parents that made the playground in Bremerton get remodeled so their children can play. Who do I approach, what research do I need to do, do I find out prices and vendors? Should I approach the PTA about this? I should have someone take a video of what's involved with getting Abe thru the door ways just to get into school. The door that he goes in to and from the bus is locked during the day which is understandable. It still is not that easy to use that door way with the power wheelchair. On a different note Abe used a reserve walker today and yesterday at outpatient PT and did an amazing job. He is making good progress. We just need to keep his tummy issues under control and keep him healthy.

Just keep driving

That's been the story of my life of my these past few months, "just keep driving" or on super rainy days "just keep swimming" "just keep swimming" like Dory in Finding Nemo says. Driving to Seattle two times these week was a night mare but thankfully we were safe. I don't remember traffic getting to Seattle Children's in the morning taking 3 hours. I knew coming home during rush hour was bad. Could be that I don't typically schedule 8 and 9am appointments but these appointments were scheduled for us prior to hospital discharge. Since I drive a lot, over 600 miles a week I thought I could handle it. We barely made it on time for the appointments. On Wednesday the power wheelchair lift that we struggled to get insurance to cover broke as I attempted to unload the chair at Children's. Thankfully I had a back up stroller with me however I probably could have borrowed a wagon or wheelchair for the day if necessary. Driving 2 hour round trip to Puyallup 3 x a week  and 80 minutes to Tacoma 2x a week for probably sounds like too much for most people. That 's exactly what I have been doing since Abe came home from the hospital in September. Twenty five trips over Tacoma Narrows Bridge the month of October. The doctor saw my distress with managing a 5 year old that had major surgery almost 3 months ago and a busy, cranky, teething toddler that she decided decreasing PT to three times a week.I really don't know how moms with multiple kids do it. Yes I only have 2 but right now they both need to be feed, dressed, diaper changed, lifted in and out of carseat, wheelchair or stroller. Other kids are able to put on their own shoes, clothes, feed themselves, climb in and out of the car independently and but mine rely on someone helping them. So it is probably a lot more care involved. Some day mine will be more independent but not yet.  I feel like a failure that I can't continue the five days a week of driving, picking Abe up at school or dropping him off but I just can't do it any longer. Driving in the rain sounds like no big deal since it always rains in Washington but when it's dark, foggy, windy and lately pouring down rain driving has been difficult. Probably explains all the car accidents that I have witnessed lately. I am very thankful that my family was not involved in them, just inconvenient for us to be headed somewhere that should take 1 hour 20 minutes turns into 3 hours and then 2-3 hours home.  Over all the whole team feels that since Abe gets PT at school he will do great. I am just concerned that he won't reach his full potential with 2 days less therapy. In the long run is it probably best for the whole family for him to only go 3x a week for PT. It's gives Abe two full days at school, allows Luke to be home and sleep in, for me to possibly get our house clean including dishes and laundry so next month we can decorate for Christmas. Having Abe at school two full days instead of all 1/2 days will help him learn his power wheelchair better and help his maturity level increase. He was able to read the word "the" on Thursday I was impressed. Abe is able to bring himself to a standing position and maintain in for a significant amount of time. His feet are much more relaxed and his toes don't point down as much as before. He was cleared for the pool. I asked if we could wait until next week for this since I am just wiped out right now. I even forgot Abe's backpack for school yesterday but I did stop and buy him food before he went. The developmental testing by a doctor at Seattle Children's Hospital confirmed he does have a autism diagnosis. There was question and disbelief among many professionals when he was originally diagnosed by a doctor at Naval Hospital Bremerton. Abe is very social and shows concern for other people's feelings.  He was almost 3 years old when he was tested and now that he is older he is exhibiting more characteristics that typically occur with autism. What is interesting is early on other parents of children with autism said Abe needs ABA, my response back "he has many diagnoses but autism is not one of them".  He was diagnosed in 2011 but now that he is older he is not as social as he once was. He prefers to watch videos of elevators on You Tube than play a game with us. I checked into ABA services for Abe and it helped him. Currently he is not receiving ABA services because we lost ECHO benefits. Tricare requires testing to be done upon retirement in order for the child to participate in ABA therapy. His IQ testing was disappointing. I don't have the formal written results yet but I was told he was found to be extremely low. I have a hard time accepting this because he can read some words, talk, count to 100, knows ABCs including recognizing them in printed form and numbers. He does mixed up B's and D's but I have heard developmentally normal for 5 years old. His memory is great too. He knew today was Saturday and he could get the fire truck for sitting on the potty all week. Then he asked what do I get next Saturday. He often reminds me you didn't pick out clothes for tomorrow, pack us snacks. He will misplace something like a toy WII remote and remember when he put it. In some areas he scored 5 years 4 months, he will be 6 years old in February, so slight delay but in majority of areas he scored 2-3 year old age range. I know he is delayed in all areas but still difficult to hear your child has an extremely low IQ. I was originally told would be in a vegetative state if he survives at all. He is here 5 1/2 years later and is thriving, might just need extra help to learn to read and write independently.  I am curious if the results of this testing will result in any IEP changes or changes in services for Abe. The doctor was very kind when she told me the results and was careful that Abe did not hear her. At a school carnival last week Abe said "I did not do it right" and felt the need to return the candy because he felt he did not complete the game probably. This is good and bad. Good that he had the intelligence to know the the ball was the wrong way but bad that he felt he did not do it right which can contribute to him not wanting to try in the future. It broke my heart and opened my eyes that I need to encourage him other wise he will have low self esteem.  We want to maximize Abe's potential.  It's been a rough month losing respite care. Abe qualified for personal care provided but we need to find someone to do it.