Tuesday, April 15, 2014

A quick little update

Jude was so cute last night. He was just talking up a storm to me and was loving me holding him. We have been fairly busy lately and I haven't been able to complete my normal holding routine every night. I think he was really missing that. Overall I think Jude is doing well. He is still pretty toned out and I am still seeing more increased startles and a few seizures. However, he seems happy and is healthy. Next week we go for his injections and I will be sure to keep everyone updated. I don't have the exact time of the procedure but I will post updates from the hospital.

I was reflecting on the past year today and things that have transpired. I have learned some hard lessons for sure. I have learned I should be more tolerant, don't get my feelings hurt so easily, and being outspoken isn't always a great quality. I also learned that sometimes God has people move on from your life and as sad as that is it's normally for reflection and to open new doors. So I am taking time to be grateful for those in my life today and to remember those that have left fondly.

Tuesday, April 8, 2014

Go to sleep little Juders!

Jude didn't sleep well again last night AT ALL. I didn't either, but still. Whew, he was up and down. It is normal for Jude to wake up several times a night, but eight or more just does me in. I know we all have our remedies for sleep, but like Dr Riela said this is just something we will do for Jude throughout his life.

When we go to sleep at night our bodies know to reposition itself as the hours pass on.

Think about the last time you slept really hard and slept in one position. You probably woke up with the blood flow constricted to your arm, wrinkles on your face, or achy muscles. Jude's body knows he needs to turn, but he doesn't have the physical capability to do this. So he relies on us as his care givers to reposition him throughout the night. His body reacts by Jude whining or moaning for us to come help him out. His muscles may be sore or he may be getting uncomfortable.

My bet is he sleeps very well tonight.

Thursday, April 3, 2014

Speaking in the counts voice........1 sick kid...........no TWO sicks kid.....

I have one sick kid at home and one kid I think is sick. Emily is in bed this morning with a fever, is pale, and just doesn't feel well. Jude has been very toned out the past few days with Charlotte, but seems happy when I am at home holding him. However, last night he was up and down the ENTIRE night! I am exhausted! I got up 5 times and I counted three times Mike got up. We probably got up more than that because sometimes I find Jude turned and neither of us remember doing it. Jude was congested last night and having the worst sleep apnea. It was really scaring me. Before I rush to conclusions I am waiting to see how Jude does today. I thought it was the weather but I did pull congestion out of his nose and he threw up yellow liquid with Charlotte yesterday.

So here is the deal..............everyone knows we don't sleep through the night and after almost 6 years of this I get grumpy. My responses may not be the ones you are looking for, I can be short tempered sometimes, and I can get easily offended. I just want to say thank you to my true friends who have been ever so patient throughout these past year. I am eternally grateful for your understanding, not jumping to conclusion, and your patience.

Wednesday, April 2, 2014

Jude's procedure

So as I mentioned at the end of April Jude will be getting an injection of Baclofen into his spine. Here is the definition.

"Lioresal-Intrathecal (baclofen) Injection is a muscle relaxant and antispastic used to treat stiff or rigid muscles (spasticity). "

They will be putting him to sleep for this procedure. He will get Botox again and then the injection. If it goes well they talked about putting in a Baclofen pump but I am NOT for this idea. They will have to do some serious convincing. It's a very large pump that goes under the skin.

I don't want Jude to be in pain, but I feel like this is opening a portal to a whole host of problems and possible infections. Currently Jude seems to be doing very well. He has been high toned, but that could be related to the weather. We did increase his seizure medications and that seems to have made a difference. They also increased the speed of his tube feeds and that seems to help some with his sleeping.

So Jude will have this procedure 4/24. We then head with Emily to compete at Dallas Teen USA that weekend.

Wednesday, March 26, 2014

awareness awareness and sweet pictures

Yesterday was Cerebral Palsy awareness day. Today is Epilepsy awareness day. May 1st is Pediatric Stroke awareness day. Sometimes I feel overwhelmed by the awareness of it all. Laced with ribbons, colors, media, and bumper stickers. It seems there is a color and an awareness for everyday of the year and Jude fits in a lot of them.

I get it though.........I really do. The need to create awareness and education for the rest of the masses that have no clue how hard our child's daily struggles are. To help prevent this from happening in the future and maybe finding a cure at some point. When you find a purpose for yourself and your child the disease or affliction can take a positive turn. When you find others in your situation the vast loneliness of it all eases somewhat. It's a positive way of spreading information about a negative affliction.

I will just be wearing a rainbow of ribbons.

I will leave you with a sweet picture of Mike and Jude I took last night. He sure loves his daddy!

Monday, March 17, 2014

Jude's MRI and doctor update

Jude's neurologist called today to give us an update on Jude's bloodwork and his findings on the MRI. The MRI was really for the doctor's benefit so he can better assess how to treat Jude. He said that Jude's brain showed a lot of white matter damage which indicates a massive traumatic injury which leads him to believe the diagnosis of an  intrauterine stroke was accurate. Even after all these years when I heard that I let out a sigh. I know Jude's disabilities are not my fault, but as a mother I continue to question what I did wrong. I always wonder if there is anything I could have done differently. The doctor said whether at birth or in utero Jude DID have a massive stroke. We know from Dr Twickler (MRI) that it was in utero. The doctor didn't mention anything in regards to the brain surgery he had mentioned before. I am not sure if this is because he didn't see a need within the pictures the MRI supplied or the fact he knows we would say no.

The doctor increased Jude's seizure medications at night. He said that Jude not sleeping well combined with the nurse possibly seeing a seizure leads him to believe there has been something festering for awhile. He said seeing a seizure can be the end to a beginning. I never thought of it that way before.  Therefore, we are going to see how increased seizure medication helps control Jude's recent issues.

Jude's red blood cell count was a little low. We are going to have this retested in April to see if this is just jude's norm or something we should watch. At the end of April we will be taking Jude to have his botox and they will be doing a spinal on him. Therefore, they will be putting him to sleep again...ugh. So I have taken two days off work to get this completed. Emily will also be competing in Miss Dallas Teen that weekend so therefore my family will be in town. I think it will be nice to have them here for both of the kids that week.

Friday, March 14, 2014

Dear Jude.........what's wrong?

I am at a bit of a loss again with Jude. He slept HORRIBLE last night. He probably got good sleep between 2-5:30. Then today Charlotte said Jude had a seizure :(. This is new. Jude has a lot of startles that look like seizures to most people, but we don't count those.

Now tonight when I got home he just wants to be held again. He is very toned out when I hold him, but it makes him feel comforted. If I put him down he gets very upset.

Watching for signs of an infection or something. Maybe he is outgrowing his meds? Maybe it's his legs?

It's a real guessing game this time.