I am so sorry it has been so long since I have updated. I had tonsillitis last week. Normally adults my age do not get it, its mainly younger kids and teens or adults who are smokers. I don't fit into any of those categories. My doctor said I most likely got it from being run down (imagine that). I used to get it when I was younger frequently. I tend to have flare ups during stressful times.
I had gone on antibiotics last Sunday because my throat was hurting but they were not helping so luckily I went to the doctor and found out about the tonsillitis. I was put on a stronger antibiotic and I am so happy to say that I am finally feeling better. Of course I worried about the kids because it is contagious through contact. Luckily I wash my hands like crazy.
EAR, NOSE & THROAT
I had them check the kids out as well but they both were fine. I did find out that Aidan's tonsils are very large, they are not infected or anything but because of their size and his snoring he may need them taken out. I can't bare the thought of watching one of my kids go through another surgery. I just can't. I have to bring him to an Ear, Nose and Throat doctor and get him checked out. I was told by Philly that Jacob should go as well so I guess I will be bringing them both.
While in Philly they told me he passed his hearing but I recieved a letter saying once we were home saying they don't check for everything and he needed to be tested. It is obvious to me that he hears fine. He turns with each voice he hears and is the lightest sleeper ever. But to be safe we will have him checked too.
Jacob is doing very well. He is off of the oxygen during the day and his SATs stay in the 80s which is wonderful. He continues to need it during the night. Around 4 hours after he goes to sleep he starts dropping into the 60s. I am wondering if it is because he is on the overnight feed. Maybe his body needs to work harder since it is digesting food rather than resting. Either way I am confident we will get off the o2 at night eventually. I can't describe how great it is to have a wireless baby again during the day. It was so hard to move from room to room with his big oxygen concentrator. I still have him hooked to the pulse ox alot to make sure his SATs are ok but I am starting to turn that off periodically since he has been so consistant the last few days.
Jacob is still doing so well with bottles. Sometimes I don't have to use the tube at all. Most of the time he takes about 60mls by bottle and the last 20 go through the tube. I am so proud of him. He is even trying to hold the bottle himself. He also eats much faster because he drinks the bottle in about 10 minutes. I have trouble getting him to eat much at the first feed of the day but his speech therapist and I think it is because its the first feed after his overnight continuous feed.
Jacob's nutritionist (Amy) will be here on Tuesday and I look forward to talking with her about transitioning him away from continuous feeds at night. I want him to experience as much "Normal" as he can. The problem is that most of his food comes at night. He gets 400ml over a period of 10 hours. That is alot to transition. Jake has never done well with high volume.
Jake has started eating baby cereal. He is doing so well. At first he was not to sure about the spoon but he puts everything else in his mouth so he did not mind. He caught on so fast. He opens his mouth as soon as he sees the spoon and looks like he knows exactly what to do. This kid is a pro! I have started mixing it thicker and he continues to chow down.
First time eating cereal
Jacob has really started grabbing onto things and getting control with his hands. He also has been passing things from one hand to another. He grabs at toys and is starting to be able to reach for things and grab them. The other day Aidan and I were dancing around and Jake started moving his arms and legs like he was dancing too. It was so cute. I love seeing Aidan and Jake interact.
You would never guess that Jacob just had open heart surgery 3 weeks ago. He just amazes me. I know I say that all of the time but he just looks so good. He is such an inspiration.
Jake has a cardiologist appointment on Tuesday. He had a chest x-ray done and if everything looks good then he may be able to get off of the Diuril. This would be great because he is now on 8 different medications and 4 are compounded so it gets very expensive. Plus since they are specially made so I can't just go grab a prescription if he needs it, it takes time.
He also will be meeting with his speech therapist and his nutritionist next week.
Start! Heart Walk
I am pleased to say that Team Jacob is doing really well at collecting money for the American Heart Association. We are the 7th highest collecting team and I am the 5th highest collector for the heart walk. I can't thank my team members enough for their support and hard work. Thank you so much for everyone who donated to this great cause. It is so dear to my heart, Thank you!
I am working with a company trying to get a good rate for the shirts. I had to simplify the design for the shirts that the team members will wear. I am going to order my shirt online so I have his picture on it. I also created Jacob a onesie and Aidan a t-shirts.
If you would like to donate to this great cause you can do so by clicking on the banner at the top of this blog.
I look forward to seeing everyone at the walk on September 18th!
Shirt design for team members
Jacob's Onesie Design
Aidan's Shirt Design
Jacob's Onesie Design
Aidan's Shirt Design