Saturday, December 27, 2014

Christmas Letter 2014

In case you have not noticed we have not sent out Christmas cards yet and it's already December 27. I just could not decide on a picture. I thought about one taken in September but I prefer a recent one of the boys because they have grown so much. Since our schedules are so busy we just have not taken time to take the picture. We might send out New Year's card. Here is our year. The two major words that come to mind to describe our year are change and BUSY. Glenn retired after 20  years in the Navy in October. He started working at Boeing in July. Boeing is about an hour away but he is part of a car pool so this saves some time. He enjoys gardening and built more raised beds for our garden. He also got his Ham radio license. He is still learning about the Ham radio. I am busy managing all of Abe's appointments and advocating for him to receive the services he needs to maximize his potential.  I also attends a women's Bible study at church but rarely get the homework done. Abraham got a power wheelchair in June, had surgery in August, selective dorsal rhizotomy. The surgery requires a lot of physical therapy. The therapy schedule was five days a week and currently is three times a week. He has made progress however still requires Bacolofen for dystonia. He started kindergarten in September but misses a lot due to his outpatient therapy schedule. He might require surgery on his hips too because they are out of socket. Hip problems in children with CP is common. He is still recovering from the SDR surgery so we opted to have the x-rays repeated in 6 months then decide if the surgery would be beneficial or necessary. The SDR should have helped loosen his muscles to prevent the hip from pulling out of socket but unfortunately the damage has already been done. When he is a teenager and young adult he might have pain and osteoarthritis in his hips. He seems to enjoy school but on occasion does not want to go to school. He currently is not receiving ABA therapy or respite care. I am working on getting ABA therapy for him again. The respite care was only for active duty military families. However he did qualify for a personal care provider. We met the new care provider on Monday. It will be different than respite care but still someone to help care for him. This will allow both kids to get the attention they need. Luke has grown a lot and went from barely crawling to running, jumping and climbing. He talks and signs a lot. He likes to eat fruits and vegetables. He loves dogs and airplanes.

Friday, December 5, 2014

Apologize letter

Dr. Sir at Kersey Mobility,
I heard you come in and complain to the quite couple, one in a power wheel chair and his wife. I stopped chasing my 16 month toddler around the show room vans with nifty ramps that he enjoys running up and down on to move my stroller. The stroller was blocking seats since it next to my disabled 5 year old that was quietly watching elevator videos in his power wheelchair. I said nothing to you just moved my stroller so if you wanted a comfortable seat you had 4 to choose from. I was not sitting down for any extended period of time any ways. You still sat in the less comfortable chair.  My toddler lost interest in the demo vans and ramps and found his brother's power wheelchair buttons, the horn and the power button. I repeatedly told him no that's your brother's chair we don't play with it. I pulled the safety brake on the chair so it would not move and to prevent any injury to anyone. I picked my toddler up and he became to scream in a very high pitch scream. I get it no one wants to hear a kid scream but your response "Oh please" and the tone used and the eye rolling just drew my last straw. You have no idea what my kids and myself had already encountered today, an hour commute one way, an hour long PT session followed by an hour long ST session. Yeah no fun for a healthy, full of energy 16 month old boy.  I let him run up and down the stairs at the therapy center plus I gave him snacks and lunch. The sweet boy was sleeping soundly when we arrived to  have the power wheelchair lift fixed. I tried my best to not wake him up when I transferred him into the stroller. It was successful until he heard phone ringing and people talking. This was a few hours before you arrived. This was our 3rd time there since it broke in October and our 5th time since August. The mobility place is not a fun place to entertain kids but I tried, letting him burn off energy prior to arrival, snacks, lunch, toys, books and hiding from him on the other side of the van which made him giggle.  I tried to nurse him too but he is easily distracted. The screaming was probably your last straw too. You probably have as much if not more stress caring for a disabled spouse and I do caring for a disabled 5 year old and a toddler. It's not easy caring for a disabled person 24/7 young or old. When you said "oh please" and rolled your eyes I commented back "he's only 1 years old" and "he already sat thru 2 appointments". You told me "enough" but I was not done so I continued to comment "I bet every single adult in here has screamed and thrown a fit at one point in time or another" "yeah but that was a  long time ago" you added. I added "how it's not easy to entertain children here and since it's raining there is not much I can do". I said nothing more but offered to go outside if it was not raining and that there is not much I can do he wants to play with the buttons on the power wheelchair. You started cussing at me in front of my boys. I told my children that we would wait outside and risk ruining our expensive power wheel as long as no one is smoking outside. You got up and went outside. The office staff let us go into an office. I put my toddler in my Tula in an effort to keep him from running around and screaming. He was tired and over stimulated by this point. I am sorry I kept explaining. You were probably there today because the device you use to transport your disabled wife was not working probably.Although the staff is nice and they have pretty Christmas decorations up neither one of us were there because it's fun. If you had said something like "poor kid must be tired" "he is probably bored" "is he hungry, ect" then momma bear might not have came out. I did not use profane language but just wanted you get a small glimpse why my 16 month old was upset. He wanted to play with power wheelchair. Even before he started screaming you seemed angry and stressed. The device for your wife probably was broken since she was not with you. It might have been the only break you have had all week from caring for her. Again I apologize my toddler started screaming. I should add to those reading this Luke did not scream for an extended period of time, just a quick screaming session while saying "no, no".   If they had weekend hours I would have my husband bring the chair and the van in without my kids but unfortunately they are only opened Monday-Friday normal business hours. It's only 10 minutes from where Abe has PT, OT and ST so although not super convenient to bring both boys  plus Abe misses school, it is convenient that we are already in the area. Although you don't have any children yourself please remember you were once a kid yourself and your probably would not have enjoyed someone telling you no to playing with the electronics on a power wheelchair. I hope you got the device on your vehicle fixed so you can transport your wife. I also commend you for sticking by her side even with a disability.  I have no idea the extent of your wife's disability but given the vehicle you brought in and because a place that manages accessibly lifts for wheelchairs I can imagine she has extensive disabilities.  That's it for now. You will probably never see me again and won't have access to my blog but I felt in my heart I needed to get this out. My next blog post will be about barriers to care. Yes having dual insurance is a barrier to accessing ABA therapy. I will post this something this week.                                                                             

Saturday, November 29, 2014

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.

Monday, November 17, 2014

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.

Wednesday, November 5, 2014


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.

Saturday, November 1, 2014

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.

Tuesday, October 14, 2014

2 months post SDR

All I can say is where did the time go.I know, I know, it is probably in the 5 day a week of commuting to Tacoma and Puyullup for physical therapy and either dropping or picking from school. Tuesdays are really the only day I have more time at home. If Luke sleeps in or naps I can actually wash the dishes. Today Abe was crying and screaming a lot not wanting to go to school so it woke Luke up. I feel bad for Abe because I have to wake him up between 630-645am since bus comes at 725 even though school starts at 835. He has had a lot of resistance towards wanting to go to school even on the days I drop him off. This past month since Abe left the hospital have not been easy. I have made countless phone calls, one in person meeting, in personal conversations and emails in an effort to get him the one on one paraeducator as recommended by the whole rehabilitation team at Seattle Children's which includes a doctor, PT, OT, recreational therapist, neuro physiologist and an educator. I am beyond momma bear status on this. Not to mention he barely got teacher for vision impaired services as I was picking up last week ONLY because I sent an email reminding the whole team 7 minutes in the IEP. Speech was missed for several weeks as well because no one gave her Abe's schedule. I saw her one day as I was bringing Abe or picking him up and she had no idea about his outpatient schedule. She kept coming on a day and time when he had appointments. That's not her fault but if someone had gave her his schedule this could have been avoided. Moral of the story the beginning of every school year I am requesting a meeting with the whole team. Another thing that is completely unacceptable but we are  all human right is Abe's lunch comes home almost completely untouched, plus his water bottle. Oh the real kicker is he was not taken to the toilet or diaper change and he was at school 830-130pm that day. A basic need not being met because they are under staffed. I fully support employees getting breaks and lunch. I worked several years as a nurse and if you don't get a break or eat you are cranky and not as productive. Abe fell out of Rifton chair as well. I really don't want to file for a law suit or pull him out of school  but unless more support is provided I might not have a choice. Not offering a child liquids or bathroom is not acceptable. Also by law anything in an IEP must be followed or legal action will be taken no IFS ANDs or BUTS.  I also have spent countless hours advocating for what needs to be done to get ABA therapy back. Abe had the ADOS II testing done already but needs Vinland for the ABA pilot program for retired military families. Retirement for us meant we lost ECHO benefits for Abe including ABA service and respite care. I am working figuring out respite either through DDA and DSHS. Our former respite provider has agreed to be a "babysitter" we  just need to pay her hourly. She has been with Abe since November 2010 and he seemed to have some adjustment issues not having her around. She can't come and watch the boys 40 hours a month but is willing to occasionally babysit them but it's not thru any programs just straight up babysitting. I am thankful she is willing to do this since Abe has missed her a lot. He also lost ABA therapy until all the testing and reports are done and Tricare approves it and the company has availability. Also figuring out DSHS benefits. I have a rough time with Paratransit Services but I think I finally got the it all figured out. Fuel card is provided for his appointments which is a huge relief for us. Just hope the fees for the Tacoma Narrows Bridge won't be a problem. The bridge fees are $90.00 a month for one year plus the cost of fuel and wear and tear on our van.  Some days it just depends on who answers the call. The former teacher quit after the first week and Abe has a new teacher now. The new teacher seems to care about the kids and an IEP meeting was set up for next week. I started asking for one in August but I guess momma bear wasn't assertive enough yet. Abe getting stronger but had a cold a few weeks ago that set him back a little.  Some positive changes I have observed post surgery, his ankles and feet are much more relaxed so getting AFOs and shoes on have been a lot easier. He is still very weak in sitting balance but is able to pull to a stand and hold onto a table or a wheelchair ramp independently. His legs still cross over but not as much. He is continuing to improve and get stronger but it is definitely a process. This momma feels more like a case manager and a taxi cab driver lately.

Monday, September 1, 2014

Changing Leaves

As I drove to Seattle Children's Hospital today I noticed the yellow leaves on the trees. It dawned on me that today is September 1st. With the changing of seasons many changes are occurring for my family. Abe has one more day of intense inpatient PT, OT and recreational therapy then he will be released back solely into Glenn and my care. We will be responsible to break the non desirable movements such as bunny hop crawling, reverse "W" sitting, standing on the tips of the toes, crossing legs, ect. Wow this will be a lot of work especially with an active 1 year old Luke running around. Not only has a new month started since we first got here and the leaves are starting to change Luke has matured a lot. Luke can walk/run faster, say more words, sign "hi" "bye", "more", "all done", sit and play with play dough for 5 minutes (this is major for a 1 year old boy to sit for that long) and open doors. Abe has regained strength but lost 2 lbs since first getting here. Abe gets frustrated with the restrictions on "no don't crawl that way", "no you can't stand yet", "no you can't crawl out of the hospital bed".  The PT wants his movements to be strictly monitored which is impossible in a hospital setting when Luke is running wild. It 's a great sign he is trying to move around more. Once at home I will need to be momma hawk watching his every move while keeping Luke out of trouble. I should lose a lot of weight will all the running I will be doing. Other changes that my family is facing, last month of active duty military however Glenn has been at Boeing since mid July. Yes it was not the ideal time for him to start a new job. There was a delay in Abe's surgery getting set up because the nurse coordinating it was on maternity leave.  We have a van, house, lots of upcoming co pays for all of Abe's medical care coming up so yes my husband did need to work during this hospital stay. Other father's do the same thing. Some fathers lose their jobs and foreclose on their homes when their child is in the hospital. Since this is inpatient stay 8 for us for Abe in 5 years we have met and talked to a lot of people. Some fathers have to stay back in the states where they live to care for other kids and to work to provide for their family. It's not that the father's don't want to be there they just want to care for their family and sometimes it might not always be right there for every second, every minute of every day during an inpatient stay. Glenn is the oldest of 4 children so he wants to be responsible and think long term about providing for his Abe, Luke and me. Abe's care is going to add up as we transition to a "retired military" family. Yes $12.00 copay is not much but when your child sees PT 5 x a week, OT once a week and ST once a week plus ABA it adds up. Not to mention fuel and Tacoma Narrows bridge fee, diapers, wipes and other things that insurance does not cover that improve Abe's quality of life. Also specialists care like neurosurgery, pulmonary, neurodevelopment, endocrinology, rehabilitation doctor, ophthalmology and dentist more than the average 5 year old. Even if he sees 6 providers in one day the copay is $12.00 for each provider he sees. Raising kids is expensive but thrown in special needs and the cost to raise them dramatically increases. This past week was difficult, I had to drive Abe to Bothell for casting for new AFOS (ankle foot orthodontics) since the new ones I picked up July 29th did not fit properly and they were still under warranty and made by an outside company so they could not come to Children's to make them. I had to shorten respite care hours that day and use only for the appointment in Bothell (thankfully she was willing to come even though not the full 4 hours we had originally planned) because Abe had to be back by 1pm for PT. Abe was put in viral isolation Tuesday night due to cough and sneeze so technically Luke was not supposed to be here. I was advised to make other arrangements for Luke. That is difficult because he breast feeds, I have no pumped milk stored for him and no family in the area. The main charge nurse on day shift said well he is breastfeeding and your own kid so just stay in the room. So Wednesday Luke, Abe and I had to stay in his room after we got back from Bothell. Luke was not allowed in the play room or the outdoor park. I completely understand because there are many immunosuppressed kids around here. I had signed up for a dinner that the Fisher House was taking guests to. The plan was for Glenn to watch both boys at the hospital. I called Glenn and let him know the situation. Since they did not recommend Luke to be visiting I had to make an extremely difficult decision to leave the hospital so all of us, except Abe, went out to dinner. I stopped in the hallway and cried when I asked the evening charge nurse if his door had to be closed. It broke my heart to know that Abe would be in a room alone until Glenn got there. I got stressed out that he would try to climb out of bed and would fall. Not sure he is mature enough to use a call button yet. The resource nurse assured me that he would check on him, help him with dinner and play with him. Since I signed up for the dinner I did not want to be irresponsible and not show up. I left since the nurse reassured me. It's rough but as a mom of a special needs kid you must take time for yourself. On other days he was able to sit with the nurses and he is so happy in the morning when I get here. Since he was in viral isolation he had to stay in his room and all of this happened after I left Tuesday night.   We enjoyed the dinner, took me over an hour to finally get there due to traffic and GPS constantly wanting me to take I-5. Abe did great with the nurses and fell asleep. Kersey Mobility called me Wednesday afternoon asking if we wanted to come by 9am the next day (Thursday). I said yes because it needs to be done. I had been working on figuring out insurance coverage or reimbursement for this since May, well we visited all the places that do the install in February and March but got serious in May. It was a choice between Abe going for kindergarten testing the very first day after leaving the hospital,completely missing school Thursday or missing Friday PT next week for kindergarten testing. I don't exactly know the kindergarten schedule for next week but I know the testing options were Wednesday, Thursday or Friday. If the lift was installed next Thursday I potentially could have had both kids with me or if we dropped the night before no transportation all of Thursday therefore Abe misses school since no bus service till the 8th. Yes it was a huge inconvenience to entertain a 1 year old all day there but it's done and Seattle Children's will be happier that the chair is more secure in our vehicle. Ideally we wanted it installed in June but it took Tricare awhile to get it worked out, for Universal Mobility to find a local place to subcontract with them. Originally it was with Absolute Mobility but they wanted exact measurements to ensure it fit properly. I could have dropped by their Tacoma location July 18 but was told no not necessary just get it measured. I had Olympic Pharmacy measure it while the chair was being serviced. I left voice message with height and width with Universal Mobility but they are 3 hours ahead so she received the voice mail on Monday. Absolute Mobility called me Monday say we need you to bring it here with the van for exact measurements. We came Friday July 25th after Abe's PT and ST appointments. I called since both boys sleeping and they needed to look at chair and van. Unfortunately the guy that came out had no idea about it. I asked for the lady I spoke with but she was busy, Abe had ABA later that day so I said I can't wait too long. I asked do you need to measure it,even asked several times, response back "No" I have the information I need. Again Monday morning a call, we need you to come back in and get it measured. The day I could come was August 1 after PT and ST. This is now 3 week delay, well even longer because Tricare called me shortly after 4th of July to say it was approved. Universal Mobility switched to Kersey Mobility per my request. I tried to schedule the two days I had 10 hour respite care but they did not have the part the first date I gave them and the 20th they had no availability.  The lift needed to be installed, lifting and pulling out a metal ramp was heavy and deemed unsafe transport by the car seat specialist at Seattle Children's. I had to make the decision late Wednesday afternoon to get it taken care of the next day. It was less than ideal to leave Abe in the hospital all day alone but traveling with a 340lbs power wheelchair improperly secured was not ideal either. If Abe were still in viral isolation Luke would not have been able to visit any ways. I knew Abe had a lot of therapy on his schedule and would be super busy so I made a tough decision to have the lift installed. Luke and I got them early, we took a few short walks then a 2 hour walk. It was difficult but would have been more difficult with both kids there all day. Sometimes you just have to suck it up and do what you have to do to make life better for your special needs kid. Enough about the lift, just hope it continues to work and no issues. The 2 week check up should not take all day like the initial install did. The good news about the lift is I got exercise that day 2 1/2 hour walk,  met a young adult that I recognized as a volunteer from the hospital, and  retired teacher and a 35 year old with CP that has the SDR when he was 14 years old. The 35 year old is not able to walk any longer but he blames himself saying that he had a lot of pain so he chose to be in the wheelchair and now he can't walk. That part was not reassuring but what gave me hope for Abe's future is his man lives independent from his parents, had a job and drives himself. He thought I was 22-29 years old, boy was he wrong. I was impressed that despite his CP since birth, he was a preemie of a twin gestation but his twin brother did not survive, that he was so independent.Also the volunteer is a brain cancer and hydrocephalus survivor, former patient here. Although he can't work a typical job he is motivated to help Seattle Children's Hospital even if it means taking 3 buses to get here once a week. Glenn met us at the mobility place since close by his work and I heard Abe was out of viral isolation so he is able to leave his room. After the install was complete Luke and I headed to IKEA for a break. It was not a quick trip but IKEA never is. I saw it going to Kersey Mobility in morning and decided it would be a fun place to check out since they get new products all the time. Another transition is Abe is going to kindergarten and will be transported in his power wheel on the bus. Also his PT, OT and ST have been transitioned to CTU in Puyullup. He will have PT 5 days a week and OT once a week. In the past PT was once a week and OT twice a month. We lose respite care October 1st. Please be patient with my family and understand that transitions are difficult even happy transitions. We might be tired, stressed, won't remember your name, might have to end an adult conversation to chase after Luke or correct Abe's crawling. Please understand we are not trying to be rude it's just  season of our life that will pass. We are not even sure if we will do MOPS and AWANA this year. We do plan to return to church but not sure how the transition of Abe's movement restrictions will play out. Sorry for the extremely long post. I had both boys sleeping right now and WIFI so I got carried away. Luke is awake now and we have a lot to get done before we are "all done" hospital tomorrow.

Tuesday, August 26, 2014

Tight Muscles

Abe is over 20 days post selective dorsal rhizotomy. Initially we noticed wow his muscles are nice and loose it is easier to care for him but now he wants to bring his legs up and his legs are super tight. He was weaned off the Baclofen a week ago. It was over the weekend we noticed the tightness. The rehab doctor that did the pre operative evaluation did not expect him to have a lot of dystonia, The surgery does not correct the dysonia therefore a night time dose of Bacolfen will be restarted tonight. Abe doing pretty amazing, rode a trike down to the play room and outside,getting his strength back quickly. Since yesterday evening he has been very tired, not wanting to eat very much, occasional cough and sneeze. He has been sleeping since about 245pm today, well occasionally waking up crying a little bit. I really hope he is not getting sick especially since school starts next week and he has so much physical therapy to do. The professionals working with him are impressed with his skills. He is tired and sensitive to light right now so I might have neurosurgery come and take a look at him. He had an MRI the day of surgery and his VP shunt was reset that day so I would think if there were any problems it would have already showed up. If he does need neurosurgery to check him at least we are already here. He gets to leave the hospital for a bit tomorrow but not for anything fun. His AFOs we picked up July 29th are too tight around his calves and are too long in the foot. Since an outside provider did them I will have to drive him there. I just hope he is feeling better. He is sensitive to light and noise right now. I know they let him play with Ipads and they had some magnetic trains in the therapy room. I rarely get to attend this therapy sessions because I am super busy with Luke. I only have time right now to update this because respite has Luke and Abe is resting. I spend most of my time here keeping Luke occupied. Just one more week. We have done this before, we can do it. His NICU stay 5 1/2 years ago was 11 days at Madigan and 96 days at Seattle Children's we can handle one more week. I am taking a break tomorrow night while Glenn watches the boys. Today is the last day of respite care at the hospital. I am very thankful that our hours were increased. October 1st we completely lose respite care since officially retiring. Although some would say, "you only have 2 kids". Yes only 2 kids but Abe requires a lot more care than an average 5 year old just at home not including the multiple appointments for ST, OT, PT, specialist care, dentist every 3 months,ect. I have used respite care for the last 4 years for my own doctor's appointments, dental, eye to go to MOPS evening events, ect. Not only do we lose our extended ECHO benefits with Tricare but we lose respite care.  It will be an adjustment for all of us. Glenn has been at Boeing for a month now but works a distance away from our house. So Abe is showing signs of respiratory infection. If Abe does come back postive for a respiratory virus then Luke can't visit which means I won't be able to either unless someone can watch Luke. It will break my heart if I can't see Abe and advocate for him. I especially want to be here because everyday he has different nurses everyday and sometimes a nurse from 7am to 3pm, then 3pm to 7pm then 7pm to 11pm then a different one 11pm to 7am. We occasionally get the same nurse every day but it's rare. From my nursing experience you get to know the ends and outs of your patient if you are assigned to them when you work. I am surprized that 8 hour shifts are still around combined with 12 hour nurses. When I mentioned today that he has an appointment in Bothell the nurse was shocked that I would be taking him out of the hospital. I thought for sure it was in his chart somewhere. The charge  nurse knew but not the nurses assigned to him. I know when I worked here it was stressful to have patients for 4 hours then I was floated to another unit with different patients. 

Saturday, August 16, 2014

Torn Heart

Yesterday I had a doctor's appointment for the pain I had been enduring on and off the past several days that is also accompanied by nausea and vomiting.  It most likely was a kidney stone because the pain comes and goes, causes other urinary symptoms including bleeding then completely goes away. Think about this a large piece of a hard sharp, most likely not smooth, calcium carbonate deposit  scraping the side of a tiny tube, ureters as it moves in the urinary system, yeah that is kidney stone pain. Worse than labor in my opinion because my labor was not very painful (non medicated birth for Luke) except the vacuum extraction part but it was short lived.   My urine analysis showed no evidence of a UTI or kidney infection. I had pain for several hours so did not see Abe. My heart felt torn because it was a nice break away from the hospital but I missed Abe. Luke and I took a nap once my pain subsided, it was quite, dark, comfortable and peaceful compared to hospital life. After I felt better and had an appetite back Luke and I enjoyed Taco Time for dinner and a trip to Costco to get ready to eat foods. We also did some laundry then loaded back up to head to Seattle. Since respite was scheduled today Luke and I enjoyed another day to take a break and I was pain free. I took time to make a real breakfast, well scrambled eggs and toast. Then we went to Green Lake park and Starbucks. Luke ran around for awhile then we kept on walking. We walked the whole length of the park and an event was going on. I was super excited to get Luke a beach ball that will entertain him for hours while in the hospital so he can burn off some energy. We also entered a Spring free trampoline drawing. It would be super cool to win this. Although Abe can't walk without assistance he enjoys bouncing on non crowded trampolines. Luke would enjoy it too. Only 2 families win per year so doubtful but you never know. Home Depot gave us from wood kits, Gymboree some balls and bubbles and Seattle Children's a first aid kit. We did not hit every booth because they were closing down but we went to a few that is exactly what we needed right now, some bubbles, a few play balls and a reusable grocery sack (by the way Seattle charges .05 to .10 per bag). It was a nice break from the hospital and honestly I enjoyed being away from the hospital.  Walking around Green  Lake brought back memories because when I moved to Seattle 10 years ago I would roller blade, walk and ride my bike there when I had time. It was a great place to do this. I wish Kitsap county had a similar park that is good for bike rides. My heart is torn because my 5 year old was in the hospital and I enjoyed being able to nap Friday and being at the park today. I also know that to be the best mom and caregiver of a special needs kid you must care for yourself. I want to sign up for a 15 minute massage here but I don't typically have respite care on the days and times it typically would be available. Yesterday respite came for only 4 hours but today she came all day so it made it a little more bearable for me to be away. I was in too much pain to be driving back and the Flomax the doctor gave me can cause drowsiness so I wanted wait several hours to drive back. Flomax is used for prostate problems however it also relaxes the urinary system so kidney stones can pass easier. I have only required one dose so far and none of the stronger medication or antibiotics. Abe is doing pretty good but is exhausted. Today he had only a few hours of therapy but is very moody and very tired. He is being weaned off the Baclofen. Tomorrow is his last dose. We are hoping he won't need it any longer because it can cause constipation, drooling, foggy brain and many other side effects. He has been pedaling a trike and the therapists are all impressed with his skill with this even with the casts on his feet. He has casts on his feet to lengthen his tendons. He seems to be tolerating this without difficultly. He loves the attention from the nurses, volunteers and therapists. We are getting both kids car seat checks next weekend since kids grow and car seats might not always be appropriate. I have been told in Arizona and Washington 80% of people improperly install and use car seats. We get these checks so often at Naval Hospital Bremerton that was we have been teased about becoming car seat specialists ourselves. Abe is probably close to out growing his car seat so he might need a special needs one. I figured the best place for a car seat check for a special needs kid with mobility impairment, CP, is Seattle Children's. Abe is finally 35 lbs.  We are also having Luke's car seat checked since his last check with in April and he has grown. I would recommend other parents get car seat checks as well. It is a free service and better safe than sorry. I am thankful Glenn gave me a break yesterday evening and today he took a break today while Luke and I went to the park. I am also thankful that Abe seems to being doing well, for additional respite hours and for friends. I will update more most likely Monday or Wednesday.

Wednesday, August 13, 2014

Riding a trike

Today was another busy day. Slowly adapting to life in the hospital setting. This is Abe's 8th admission since he was born but our first one with another child in tow. Luke is enjoying the playroom. Since we did not have respite today they gave us a volunteer to play with Luke in the playroom so I could attend Abe's PT,OT sessions.  Abe had tons of PT, OT, recreational therapy. He enjoyed drawing buses in the playroom and taking the stander down to the playroom. Both kids are currently asleep. I am waiting for Luke to wake up so him and I can leave so I can eat dinner. It's getting so late I might just wake up him now and hope he goes back to sleep before 1am. Yesterday was rough I had nausea, vomiting and severe pain my back which I attribute to a kidney stone. I almost went to ER or urgent care but the pain subsided. The pediatricians were so nice and supportive during the kidney stone pain I endured but most pediatricians are very caring doctors to begin with. I have a doctor's appointment this week but I really don't want to travel the distance and leave Abe in a hospital alone just to be told yes you have a kidney stone, CT will call to schedule you,drink plenty of water, ect. I am feeling better today but I was in pain in the morning. I sure hope I can pass the stone without medical intervention but I know I need to be strong to care for both boys. Abe got to pedal a trike around the unit and he looked so happy. The PT was impressed by his skill. He was taught early by PT, OT and private OT at school to pedal a trike. His feet were casted again to help stretch his tendons in the back of his ankles to keep his feet in a neural position, he has a tendency to toe point due to the CP. I have enjoyed all the Starbucks the hospital has.  Abe is getting stronger every day and shows a desire to move. Tuesday a young visitor, 6 year old boy and his mom came to visit. The boys were cracking up and Abe told him that I "sugared him up" which I did with the root beer float I ordered for him. The children's pastor of Christ the Rock, Pastor Dave, came to visit today and brought some chocolate, lemon to add to water to help my kidney stone. He prayed for Abe and our family. A mom I met at a baby wearing group gave him a tula baby carrier I could borrow since Luke is getting too big for the Ergo. I carried Abe in the Ergo for a long time, till age 3 but he was much skinnier than Luke. We appreciate all the support we have, for friends and respite care. Not sure what I will do when we lose respite care in October. I will update as I can. My typing is keeping Abe awake.

Sunday, August 10, 2014

Taking a break

Respite is here today so Glenn and I are going to take a break. I do wonder how someone else can care for both boys in this situation. I don't want Luke running around in the hospital room because too much bio-hazards to get into. I know my boy and he will go straight for the bin labeled bio-hazard or the trash and power cords.  Luke is extremely active boy so being stuck in the Ergo, stroller and pack n play has not been much fun for him. He does enjoy the playroom especially the push toys but the play room closes at 4pm Friday-Sundays. On other days I had a friend or respite provider take Luke to the playroom or stay with Abe. This will be the first time I leave both boys under the care of the respite provider and the Abe under the care of the nurses. Abe has mobility restrictions, no walking, crawling or standing unless in PT but he did enjoy riding in the little red car at the playroom. Hopefully soon enough he will be allowed to crawl again because on Friday he really wanted to get down and crawl around next  to Luke. Abe does have some pain but is not always developmentally able to say that he is in pain but will start crying and not tolerate being able to move around. Eventually his pain will subside I know after my surgeries my pain eventually went away but  none of my surgeries were as major and never back surgery so I really have no idea. I do know that children heal incredibly fast and adapt much better than adults do. Monday Abe has a full schedule of PT and OT and respite is coming again so hopefully mommy can get a break. I am hoping to get to bed before midnight since the schedule is so packed but that is exactly what is necessary for full benefits after a SDR. In case you did not check it out yet go to Seattle Children's Website and search "SDR", a video series about the procedure is on their. Dr. Browd in the video placed Abe's VP shunt when he was a baby and Dr. Apkon is his outpatient rehabilitation doctor. She is currently not doing inpatient but said we request her if we wanted to. I appreciate her wiliness to accept an inpatient assignment right now however doctor's need a break too. I am not a doctor but I can imagine having inpatient duty is more time consuming and you work more hours than outpatient.  

Saturday, August 9, 2014

Post op day 5

Abe is doing amazing. He made his first trip outside and downstairs yesterday. We made it to the playroom only 20 minutes before they closed but it was better than nothing. I let Luke out of the Ergo and Abe saw Luke on the ground playing so naturally Abe wanted to play to. When I told him I was not sure that he could get down right now due to his surgery and his casts on his feet he became very upset and wanted to leave. They offered him a truck but he said no and  began to feel happy again when paper was offered to him. Luke really needed to run around. Since I was so frazzled from caring for both boys in a non typical environment I completely forgot to prepare Abe for the changes that recently occurred with his mobility. It was a super busy Friday and around 245pm I finally got to get something to eat. I will plan to bring lunch and dinner now especially if no respite care is available that day. The social worker did tell me that a nursing mom meal would be provided for 3 days but unfortunately it's against hospital policy because the sibling is the nursing baby however no one bothered to tell me this until the last minute.  Glenn does have a job so we do receive a pay check but the biggest obstacle was actually getting to go there to get food. Luke enjoyed playing in the water foundation and Abe thought it was hilarious. It was all fun and games in the water until another parent mentioned that her baby playing right next to Luke in the water was just seen in the ER for a stomach virus and diarrhea. Most of  you know I am a nurse and mom of a former preemie (Abe) so just imagine how quickly I got him changed and cleaned up. Another kid from Bremerton area had surgery too so his mother stayed with Abe while I took Luke upstairs. Security approached me as I was trying to get Luke upstairs because it probably didn't look right since I was holding him at distance and trying to get his wet clothes off of him.  Good to know they do a great job at keeping kids safe here. I got a Starbucks treat, a peach green tea lemonade, super good by the way, and Abe a cookie. Getting outside and getting Starbucks seemed to make the busy stressful day a little better. Abe got new super boots (casts) yesterday. He did pretty good but the sound of the saw was upsetting to him and Luke got fussy since I would not let him play in there. The purpose of the casting is to stretch the Achilles tendon so he hopefully down the road he won't need tendon release surgery. Abe points his toes significantly so the plan with serial casting, (every 3 days for 2 weeks) is to help his feet to be a more neutral position. He started PT and OT. He is tolerating being in a wheelchair and his therapy without narcotic pain medications however the last two evenings I have noticed he does not want to move so has required Tylenol. He has a huge oral aversion to oral medications so the first few days were very difficult but seems to except them from nurses. The plan is to wean him off Baclofen but so far I have not heard when this will occur. I have already noticed less tightness in his legs but his right arm and elbow are tight. Today rather than rushing to get here Luke and I slept in, did some laundry and took a break. I sure hope his shoes dry out soon because they got soaking wet. A dog named "Abe" came to visit Abe today and left his picture. Abe is enjoying the cards people made for him.  This week was incredibly busy and stressful but one week is almost over. Thank you friends for all the support this week, staying with me the day of surgery since Glenn was working, coming to visit us, bringing food and small portion freezer meals that are portable and watching Luke. The best advise I can give for any family that might go through a planned surgery for their child or family member: pack some lunch for yourself the day of surgery especially if pregnant or nursing, we had a 4 hour delay and I was starving, bring another adult (preferably a parent) with you if a child having surgery so you can step outside the room to eat since the patient can't eat. They did not want me to leave the pre surgery area even though I had a friend in the room with Abe because she can't make medical decisions for him.Make freezer meals in small dispoble containers that can be microwaved (I made large portion in seal a meal bag, not so handy in the situation we are in right now), arrange child care for you other children, pack non perishable snacks, bring a water bottle to refill and bring your own pillow. I will keep you updated on his progress. Sundays is a no therapy day so hopefully Abe can enjoy some time driving his power wheelchair (I got it fixed so it goes all the way to ground now Thursday and it tore me up to leave Abe but respite stayed with him that day and he did amazing having mommy gone). I felt like a terrible mother leaving him but I had to get the chair taken of and the reason I was gone was for something for him. The lift for the power wheelchair has been shipped, just waiting to get it installed. I can't wait to see him be able to stand and crawl again and potentially walk. I picked up his tricycle this past week. I can't wait to see him get strong enough to pedal again.

Wednesday, August 6, 2014

Laying flat

Abe had his surgery, in case you don't remember, selective dorsal rhizotomy. We got here early on Monday morning and he was finally taken into surgery around 2pm and was admitted to the surgical unit around 8pm.So thankful I had assistance because Abe could not eat before surgery. I had respite provider take Luke to blow off some energy and eat and a friend sat with Abe so I could go into the hallway to quickly eat a snack. Some of you have been breastfeeding mom and and well if you miss a meal you are super hungry. The anesthesiologist let Abe look at his phone and watch a video about escalators with balls coming down to distract him and make the transition to the OR better for him. Only at a Children's hospital, lol. No disrespect to anesthesiologists but most choose that specialty because less people skills are needed because your patient is heavily medicated and therefore does not talk back. I was impressed that he was considerate and did that for Abe. Abe didn't even cry leaving the room but momma did because my baby was heading to have major surgery, irreversible no going back, hope he can still stand, walk with assistance, ride a bike, potty train and all the functions he currently can do kind of surgery.  The friend stayed with me until Glenn arrived with dinner around 9pm. This surgery requires 72 hours of  bed rest, laying flat only only being rolled side to side in order to spinal fluid leak. He is much more talkative, watching You Tube videos, looking at books and wondering what Luke is doing. He wants to know everyone's name and what level they parked on. He took the paper air plane with him to the OR and his Tiny Super Heroes cape. He has been holding onto a card the same boy that made the paper airplane since his first night. The first day he was very sensitive to noise and light and mostly just slept. He is on a morphine drip to control pain, IV fluids and received a few days of antibiotics to prevent infection. I heard him coughing  then he threw up Tuesday morning and a light bulb went off in my head even with hardly any sleep; Casts were put on both feet to stretch and lengthen tendons. The abnormal muscle tone causes tight tendons. The PT that saw him pre-operatively a few weeks ago already noticed that his muscles and range of motion has improved. He mostly slept all day the 2nd day and really was not himself. Today when Luke and I arrived he instantly perked up and has been awake all day. He has had difficulties wanting to take medication even his normal medications. We are working on this. I sure hope it becomes less of an issue because he will need pain management medications and his muscle relaxer. The plan is to wean him off the muscle relaxer, bacolfen by the time he goes home. This will be great because some of the side effects are constipation and decreased alertness. An adult would not be able to take the muscle relaxer and drive. The nurses and staff have been very helpful and making sure the family is taken care of. We were approved for additional respite and it is a huge blessing. Some of you know our family has been thru a lot of inpatient stays, this is admission number 8. The other 7 were during Abe's first 19 months of life, some while Glenn is around and 3 while he was deployed. All I have to say is wow I was extremely lucky back then that I only had one kid to care for. Caring for 2 kids, especially an active breastfeeding 1 year old is very exhausting. He gets so bored in Abe's room so we have been taking him to play room so he can burn off energy. He just runs back in forth, back in forth pushing toys around. He gets sweaty he is running so fast. Then he takes a nap which is just what his momma needs. His regular respite provider is coming tomorrow for 10 hours and Murphy's Law (mom wants to sleep) Olympic Pharmacy in Gig Harbor has the new arm rests for the power wheelchair.  However this is a blessing that the part come in today, they have an opening tomorrow and I had already arranged respite. It will be good to get this taken care of before Abe needs it for rehab and honestly much easier to get it taken care of without 2 kids in tow. The automatic wheelchair lift has been shipped too and Tricare covered it. Just waiting to schedule that appointment. I will try to update this as I can but since I have 2 kids now I don't have as much time to do so. Please continue to pray for Abe specifically: transition from IV medications (he is even on IV Tylenol, just Tylenol is in IV form now) to oral medications, might need to stock up on Dr. Pepper to help this. I know soda is terrible but if it helps him take his medication then it's better than an IV constantly hooked up. Tomorrow he will be able to sit up for the first time in 3 days, little to no pain (his incision is pretty big on is lower back, ouch), that he does okay with respite provider while I have to get the power wheelchair taken care of far from the hospital and daddy is working.

Saturday, July 26, 2014

Selective Dorsal Rhizotomy

I last posted in October, wow. Guess having 2 boys keeps you super busy. Luke is a 1 years old now. He started walking on July 4th and July 14th he started climbing. Abe is 5 years old now. He starts kindergarten in September, is using a power wheelchair for his means of mobility and can pedal a bike.  He will be having surgery, selective dorsal rhizotomy this summer. The rhizotomy will help decrease abnormal muscle tone. His muscles are so tight from the CP that his hips are pulling out of socket and it is difficult for him to stand and walk. Abe is able to pull himself to a stand and take steps while holding onto little kid shopping carts or our wheelchair ramp. We ask for prayer as this will be our first time dealing with caring for 2 children during a major surgery.Here is a link about the information: a The follow up PT is critical so 6 months to 1 year will be spent commuting to and from PT 3 x a week. We recently transitioned his therapy to CTU in Puyullup to better accommodate his post operative PT needs and space for his power wheelchair. We are not sure if I can continue MOPS, women's bible study and how OT and ST will be work out for Abe.Glenn retires from the Navy in October. He started working at Boeing this past week. We are still unsure of his schedule, either days or nights. I will update this as I can to keep everyone posted on how Abe does after surgery.