Saturday, October 17, 2015
Isaiah had to get all new school clothes. Any that he had from before no longer fit, because after his surgery his hips are so so much wider. Luckily he just had a birthday! He outgrew his standing frame and his wheelchair too because of this. We were able to get his wheelchair seat re-done, but we are still waiting for insurance approval to get a new stander. What a pain! I feel bad because he loves to stand so much, and he can't until we get this.
Here he was looking all spiffy in his Jake and the Neverland Pirates shirt and his new jeans for the first day back to school.
Monday, August 31, 2015
So Isaiah had his cast off about a week and a half ago. Things are very much the same. He is still not very mobile, and it's like starting over with pain. After not moving for so long he is very stiff and tender.
We still have the hospital bed to keep him comfortable. He still spends the majority of his time here. We take him for short walks and out and about. We had thought we could take a short camping trip but it ended up being way too much for him, even though we were able to position him relatively similar he was whining and crying pretty much the whole time except when he was sleeping.
He starts physical therapy next week. He also gets his Botox injections this week. Hopefully these two things will help him be more comfortable. In the meantime, hopefully some sister hugs will help.
Tuesday, August 18, 2015
Anytime I am away from my cuties, I am always checking my phone's photo gallery just to get a peek at them. They are too adorable! I try to take at least one picture a day. Even though Isaiah is stuck in bed healing, he still has some smiles. He gets some tummy time with the help of his dad on a nightly basis, but otherwise, its only one week til his cast comes off!
Monday, August 3, 2015
One thing that lots of special needs families struggle with is finding care for their children and balancing work and family life. We have been struggling with this for a long time, and still do. But we have been through a lot and have finally come to find a solution that works for us.
We went through a few PCAs before finding one we trusted. She worked out for a couple of wonderful years. But we never really had a back up plan, since finding someone to fill in part time is even harder. When she recently decided to reduce hours, we understood, but were sad to see her less. Isaiah loves her and they have a really good bond. We tried finding a replacement and decided that just wasn't working out. We knew we were the best able to care for Isaiah and Isabelle. But in order to do this, one of us would have to leave our job. For practicality reasons, that was me.
When I approached my employer to break the news, I also proposed another solution. I could work a reduced schedule, while still coming in for meetings one full day a week. I didn't know if it would work for them, but figured it was worth a try. Thanks to my hard work and determination, they accepted this and let me keep working. So now I work from 2:30 pm to 6:30 pm four days a week and one full day. John gets home to take over at 2:30, and on the full day Isaiah's PCA stays with him.
I am thrilled with this schedule. I like to call myself a part-time stay at home mom. I get to spend more time with my cuties while remaining in the workforce. I have been working (slowly) toward my MHA, so this will continue to keep me up-to-date in the healthcare industry and valuable in the job market for the future.
I think things like this work out for a reason. Right when we thought we would need to take a major drop in our family income and struggle to get by, this just happened to work itself out. Although I am taking a reduction in my income, we are able to use some of the funds that would have gone to his PCA care as a consumer support grant, which makes us almost whole again by providing parent pay and helping with equipment needs.
Praise God for helping us work everything out and for giving us more precious time with our children.
Thursday, July 23, 2015
Isaiah came home from the hospital on Saturday. Since then, mom and dad have taken on the role of nurse to him. It really is a full time job. I feel like we weren't properly prepared proir to his surgery for all of the needs he would have afterward.
First of all, he needs a special wheelchair that can recline (his could tilt back, but didn't recline) because he can never be bent more than 70 degrees up. It can't ride in his spot in the van, and in order to transport him home, and anywhere, he has to wear a special vest and be strapped flat in the back seat. Because our van is modified, we have no middle seats, so we can't bring both kids anywhere in the same vehicle until he gets back in his regular chair.
He has a normal bed, so we were trying to make him comfortable with pillows. This was nearly impossible, so we had to get a hospital bed to rent. I wish we would have had this right away, so we didn't struggle to make him comfortable for the first two days. His bed is parked in the living room and it goes up and down, plus the head and feet go up and down so changing positions is easier.
Changing him is a struggle. He has to be rolled up and onto his side, back and forth to change what is underneath him. He was swollen bad from surgery and didn't fit into his diapers. Since he was already in the largest size of over the counter diapers, we had to buy some men's Depends that we cut the sides and put on him. I also bought some pads to put under him to catch any leaks, they were meant for puppies but they work great. He hates being changed because it hurts him. He cries and I feel so bad. But this is slowly getting better.
Because he can't sit up, his secretions keep getting stuck in thr back of his throat. He doesn't swallow well, so this causes them to thicken up. He coughs a lot and gags on it. If I don't suction it out about every 10 minutes, he throws up. He also needs the cough assist machine frequently to help keep him loose. Thank goodness we already had these machines, or we would really be struggling. Plus he uses his nebulizer as needed to try and keep his lungs healthy and clear as well.
And then there is Isabelle. She tends to get pretty jealous of her brother getting attention and pretty much fusses about half the time we aren't holding her. But she also has her good moments when she can be by Isaiah. She loves him so much and tries to cheer him up. They make each other smile. It is so cute to see how their love is developing. I think she will be an understanding and helpful sibling as she grows up.
So, we pretty much won't be venturing out of the house for the next few weeks, besides wheeling Mr. Isaiah outside to get some fresh air. I am pretty much unable to transfer him myself so I have to wait each day until John is home. As hard as it is, it is only temporary. And we already have over a week done. I just pray he heals well so we can be done sooner rather than later.
Wednesday, July 15, 2015
Isaiah had his last day of school just prior to having surgery. He was able to participate in half of the summer session, but he was done once he had his surgery. He was doing great and I know he will look forward to going again in September.
The bus ride remains one of his favorite parts. He rode the bus all by himself a few times, and he did great. I heard that he did well in school and really enjoyed participating in all their activities. They use two switches on a tray to have Isaiah ask for turns and choose activities, and one of our goals for the summer is to get a similar set up at home. We can borrow through the Pacer Center until we find out what works best for him. I am excited to give some technology a try.
I have a whole stack of art projects that Isaiah brings home for us. I am also going to find a creative way to display these. Every time he brings something home he is so proud of it. When you ask him questions about them he beams with pride. I love that he is able to participate, and hope that he continues to do well with school as we get into September.
I'm sure Isaiah can't wait to be able to swing again!
Isaiah had his last game of Miracle League baseball on July 13th, the day before his surgery. He had a great season and was so proud of the trophy he got. It was really fun to go to all of his games and watch the kids interact and get excited about playing ball.
Most of the time John was his buddy. One time his grandpa got to help. His buddy was in charge of helping him hit and field the ball and run the bases. For one game, they had a junior team come and help all of the kids. This was pretty special. It was fun to have a more "official" feel to the game. And great for the kids to interact with others. His buddy was super nice and helpful, and glad to be there.
This is a really great program for special needs kids. I am glad we live in a community where these opportunities are available.
Isaiah had his surgery to correct his hip dysplasia yesterday. He had bilateral pelvic osteotomies and bilateral proximal femoral osteotomies. Basically, he had both his femurs and pelvic bone on both sides cut and moved. This helps keep his hips in their place and prevents future injury for him. There is hardware that had to be placed, and that will need to be removed in a year or so. Because he is still growing, he may need to have the surgery repeated in a few years as well.
He is such a brave little boy, and he is so tough. He has been in pain on and off but every once in a while we get a smile out of him. John and I are taking turns staying overnight with him, and his sister will be visiting him throughout the day too. Between the two of us we never leave his side. We are hoping to be out of here by Sunday of everything goes ok.
I can not imagine what he feels like. It hurts me just to see him laying here, unable to tell us exactly what he needs and what is bothering him. We can tell by his whines when he might be in pain but you can never know exactly what he wants. He has an epidural for the time being to help with his pain. Once that comes out, hopefully on Friday, they will do a hard cast on him. He already picked out the green color. The cast will be from his knees down with a bar between his legs to keep them in place. Travel will be challenging for the next 6 to 8 weeks while he has his cast on.
Keep him in your prayers that he heals well, without complication, and that he stays comfortable. I will try and get updates on here a little more often. We have plenty to catch up on.
Wednesday, April 29, 2015
Being on maternity leave has been so nice. I live spending time with my kiddos and I am going to be so sad getting back to work. But I will be working from home most days so I won't be too far. I'm lucky to have the flexibility that my employer offers.
Our family time has been so great. Isaiah and Isabelle are the best kids we could ever ask for. Isabelle is a tiny sweetheart who is generally happy as can be. She is finding her voice and smiling all the time. She loves interacting with all of us. Isaiah loves his little sister and smiles at her. I'm sure if he could he would love to cuddle with her too.
Spring has been so nice for going on walks and runs. Baseball starts next week for Isaiah. I can't wait to share the excitement. We took Isaiah to the accessible park last week and thiughbit was windy he had so much fun. I'm glad we live close to a park that has options for kids with disabilities.