Thursday, July 23, 2015

Playing Nurse

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

School's Done for the Summer

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

Family Time

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.

Tuesday, March 24, 2015

Happy Spring

Spring is in the air, or it was until we got 10 inches of snow yesterday. We are looking forward to a fun spring and summer with Isaiah and Isabelle. First on our list of things to do is to build them a swingset. Isaiah loves to swing, and I'm sure his little sister will too. That will be a great way for them to get outside and enjoy the spring.

Isaiah is signed up for baseball, which will start in May. He will be playing in the Miracle League with other three to eight year olds. The Miracle League is specifically for those with disabilities. John and I are super excited to go and see him play. John will be his buddy, that helps him to bat and run around the bases and catch balls. Isabelle and I will be cheering them on from the stands. Below is a picture of John and Isaiah at the special field.

We also have plans to get out camping a few times this year, to spend a lot of time at the lake, and to enjoy our time together as much as possible. We have a wedding to look forward to, lots of walks and runs, and time with family and friends. Now if it would just warm up again...

Wednesday, February 25, 2015

Isaiah is a Big Brother

Isabelle Grace arrived last week. She was 8 lbs 6 oz and 20 1/2 inches long. Isaiah came to the hospital to meet her, and he was a proud big brother.

We are adjusting to our new life at home. Isaiah is getting used to the sounds a new baby makes. She kind of startles him sometimes, but overall he is pretty relaxed. He smiles at her and keeps tabs on her out of the corner of his eye. Its pretty cute.

Monday, January 12, 2015

Getting Ready and Feeding

We've been extra busy lately working on our house and getting ready for the arrival of Isaiah's little sister next month. We've been shuffling around in the house a lot. John re-finished our basement to turn it into our master bedroom, and it looks amazing. I am so lucky to have such a handy husband. Then we turned the large upstairs bedroom into a nice big room for Isaiah. He has tons of room for all his equipment and supplies, and it's decorated just for him. He got a nice mat to do his therapy and stretches on, and he even has a couch in there for his guests. Baby will have the smaller bedroom upstairs, and we painted and are re-decorating that as well.

Isaiah has been working on feeding at his speech therapy appointments. He seems really motivated now to try new things and to eat, especially when he sees us eating. As you know, his swallowing is weak, so he still has trouble with gagging and coughing while he is eating. But it's not discouraging him, and he is getting stronger every day. Even if it's only a little tiny bit of his nutrition, I'm happy to try whatever we can to help him. He is doing so well and getting so much joy out of it.

Tuesday, November 25, 2014

Medical Update

Isaiah continues to be healthy and strong. We are fortunate that he hasn't had a major cold yet this winter. He's had a few sniffles, but nothing we weren't able to handle and treat here at home. 

Isaiah had struggled with his muscle tone about three months after he had his botox injections in his arms and legs. His startling picked up and he seemed like he was more uncomfortable than normal. His doctor determined that it was because the botox was wearing off, so he had more injections. They lightly sedate him so it doesn't hurt, and the sedation wears off quickly. The injections helped him greatly and he is back to his happy comfortable self. We know these will need to be repeated about every four months, but the procedure is easy and the results are great. 

Having cerebral palsy puts kids at a high for hip dysplasia. Unfortunately, Isaiah's last x-rays showed that this has started to develop. They've been keeping an eye on it for a long time, but it is finally becoming an issue. He has a follow-up appointment in three months. It is likely that he will need surgical intervention, which requires a hospital admission and then a cast on his lower body for about six weeks. 

This breaks my heart. The thought of putting him through surgery and him sitting in a cast for six weeks makes me so sad. But in researching the issue, I know it will be good for him in the long run. Studies show that kids who have surgery earlier have better outcomes later in life. However, the surgery is not a permanent solution and it may need to be repeated in three to four years. It is something they will need to monitor and treat for the rest of his life. 

I do know Isaiah is strong, and that he recovered well from all of his procedures in the past, so I know he will make it through whatever he needs to do, and he will probably have a smile on his face. As his parents, John and I will do whatever it takes to maintain his quality of life and keep him healthy, happy, and comfortable. I love that little sweetheart more than anything in this world. 

Friday, October 3, 2014

Big News

Isaiah has an announcement to make... 

We are expecting his baby sister on February 25th. 

John and I went to the maternal fetal medicine clinic for a level 2 ultrasound today. We heard nothing but good news. Our baby looks healthy and there is nothing to worry about. Not that we would love her any less if there was anything wrong. We decided long before we went in that the ultrasound is the only test we would do, and we were prepared for any outcome, good, bad, or in-between. Every baby is a blessing, and we are all looking forward to adding a new addition to our family.