Wednesday, April 30, 2014

We are okay

Jude's PT is so excited about his Baclofen pump. I am sure everyone would prefer that the pump magically appear vs the traumatic surgery to implant it. However, once it's in place I think we will see a huge improvement. We learned that several people show great cognitive improvement after the pump because they are no longer waisting energy on pain. I can hope that Jude sees this same result. We also learned that a friend of ours that was injured in a horrific high school football accident has this pump to help with his tone and pain.

Every other day when I get home there is a report laying on my counter. It's either from Physical therapy, occupational therapy, or speech therapy. A teacher visits my house every weekday and works with Jude. His nurses also help Jude in every aspect of his tone and pain. Once we get home from work we are then in charge of making sure he is comfortable. Mike said that the Baclofen pump is another reminder that our lives aren't normal, but a miracle for Jude. Sometimes we are so resistant to modern technology that we resist what may be best for our children. After extensive education and self education we have decided this is the best route for Jude and our family.

Overall Jude is very smiley and happy right now. I enjoy coming home and seeing his happy face!

Tuesday, April 29, 2014

Jude's surgery and Emily's pageant

I held Jude last night when I got home and I stroked his little smooth tummy. I told him we were going to put a round pump in his stomach to help with the pain in his legs and he smiled at me. I am hoping he understood. As I got up for the third time in the middle of the night to straighten Jude's legs out while he was moaning in pain I realized this is the best option. I thought back to the picture Mike posted of Jude and the doctor placing the circular device where it would be placed.

If the surgery is confirmed for the date the doctors office stated then I will be at the hospital with Jude everyday but one. I will have to find someone to sit with him on the fourth day because the other girl in my office is out. I have been reading on the Baclofen pump and of course cried over this pages warnings but I understand it's just like any other medication warnings or surgical warnings. If you read everything on the warning labels they give you then no one would be medicated.

I had to break the news to Emily last night that I may have to disappoint her and some others because of the surgery. Poor Emily........she was not happy. I get so stressed out wanting to please everyone and last night I was just spent. Sometimes I just have to step back and say "I can't it's just to much".  My ex friends voice ringing in my ears that I use Jude as an excuse has left my constantly questioning what decision I make. It's also left me a bit angry.

Emily did very well at the Miss Dallas Teen pageant. She looked great for interview and she seemed very confident that she did very well. She also looked great on stage. She was second runner up and we were SO proud. She was happy but a bit discouraged, this led to a conversation about how to reach your goals you have to have patience, determination, and perseverance. We pointed out how far she has come since she started her journey a year ago and she smiled. She is always such a great sport, she just questions what more she can do to prepare. I think this is healthy as long as she keeps it constructive and she does.

Emily's friend Katie competed in the miss division and was the first runner up. So she will go to state and compete as Miss Fort Worth for the title of Miss Texas USA. We are VERY excited for her. They are such a sweet and incredible family that have really been amazing to Emily. Emily really had a great time this weekend and made a lot of friends. We at dinner out the first night with several of the girls and she seemed to enjoy that. So now it's up to Emily if she wants to compete at state again in November. Jude came to the hotel on Saturday so he was able to be with us this past weekend and that was wonderful! In addition my family flew in from Missouri to watch her including my 83 year old grandmother. She said it was on her bucket list to see Emily compete and it literally made her day. I sat next to her the whole time and we gave each other opinions on everyone's pretty dresses. My family from TX and several amazing friends also came to watch her too. We were very grateful!

So we have a month's wait until the consultation and the final decision on the surgery and confirming the dates.

Monday, April 28, 2014

The pump

I had to put the call into Jude's Dr today about the Baclofen pump, but before I could call a neurosurgeon actually called me. The nurse said Jude was sent as a referral for the pump and they were setting up the consultation. The consult has been scheduled for 6/4. Makes my stomach turn, but I know that's based on emotion vs. what I know needs to be done.

The surgery itself has been tentatively set as well and it throws a HUGE wrench into some plans I have made. It's one of those bitter sweet moments because it works perfectly with my schedule for work, but I may have to cancel something very important. I don't want to get into to many details until we figure this out and I contact the parties that need to know first.

I have felt teary all day today. First, because I know this surgery is looming and it makes me sad. I know this will bring Jude a lot of relief, but I feel terrible he will be in so much pain at first. He relies on us to keep him safe and he doesn't understand when he is hurting. Second, I have been insanely busy at work. I think my boss felt sorry for me because he brought cookies back from lunch.

Emily's pageant went well and I will post more on that tomorrow when I have the time and hopefully am emotionally stable.

Thursday, April 24, 2014

An update on Jude

We got up today at 4:30 to get Jude to Cooks by 6. Once we got there we saw several different specialists before the procedure commenced. Once the doctor came in he explained they weren't just injecting Jude with the Botox and Baclofen, but they were also using Pheonal too. I may have spelled that wrong. It's used to destroy nerve endings in motor nerves. It was concerning the doctor told us in liquid form the medication is highly explosive. However the doctor seemed convinced this was a good route for Jude to avoid surgery. It only took about an hour, but then a four hour recovery laying flat since they injected the baclofen into his spine. Once we saw Jude he was a bit groggy but then he quickly came around and he was very happy. His legs were so easy to move and I realized Jude had really been in pain and we just didn't understand to what extent. The relief of this stiffness and pain made Jude very happy!

The doctor said he could not have wished for a better result, but that this really shows Jude needs a Baclofen pump. I hate this idea but I hated the g button until we tried it. Now I praise the G button. If we proceed with the pump they would put it in and thread a catheter through Jude's spine. He would be in the hospital an estimated five days. I hate the thought of it but we have tried so many options for Jude regarding pain and tone. This would feed a constant supply of the medication that relieved Jude's pain today.

Tomorrow Emily and I leave for miss Dallas. The boys will be joining us Saturday. I am praying for a restful night for all. Jude is starting to experience so pain at the injection sites but it seems to be controlled by Motrin. I can say Jude handles a lot and he is such a trooper but mommy was a mess when the doctor asked me to hold Jude's hand as they put him to sleep. A gentle touch of a nurses hand provided comfort from one mom to another and I thank her for that. She dried a few tears with a single touch.

Wednesday, April 23, 2014

Jude's procedure, Easter fun, and the pageant

Jude has to be at Cook's at 6am for his procedure tomorrow. I am less than thrilled that I didn't find out until after 2pm what time he had to be there. I am nervous but I think he will do fine during the procedure. I will be sure to post updates on Facebook throughout the day. I will also post a finally recap on here letting everyone that he is okay. He has been very happy lately, but not sleeping well. I am hoping the Botox helps his tone and helps him sleep a little better. However, I will take his smiles any time day and night because they are precious and I am very thankful for them.

This weekend was full of festivities and preparedness for Emily's upcoming pageant this weekend. We met with Beaux who has been getting Emily ready and with Katie. Katie won a title with Emily before so it's a great thing they are competing together again. Katie is on the miss side and Emily is on the teen and they have become friends. On our way to meet the group we stopped off and picked out a few little gifts to celebrate the Easter holiday. However, we didn't think about the fact that providing chocolate prior to Miss Dallas may not have been the best idea. We got some very good laughs out of the pictures they took! This is the "Thanks a lot Em for NOTHING" picture. They all shared the photo's on various social media sites and would add #diet.

I am glad Emily has met these two. It amazes me that Emily can be so quiet and shy but then get up in front of a auditorium of 500 people and speak with ease. I think getting her involved with a  system that focuses on interview has been a great thing. Beaux has been encouraging Emily to be herself! To not listen to people that tell her what she needs to be, but focus on what she feels is important. I think this has been a great life lesson! I am also glad they laughed until their stomachs hurt this weekend. Emily has a fairly large cheering section attending this weekend including my family, her dads family, friends, and her first pageant coach Cristina and family. Emily is suddenly very very excited!

After we met with Beaux and Katie we went to my cousins house for Easter dinner. Sometimes I get my feelings hurt and I feel like my family doesn't really fit in anywhere. That's my own hang up, so it was nice to have her invite us. She even included my best friend Gina! I don't get to see my cousin often because our lives are so busy being intertwined with work and home. While I was at her house I was reminded how everyone has a place and a reason for being in a family. As Emily clung to my cousins adopted son I saw how loved he is by all of us. I was reminded that a family is what you make of it. Have patience, be kind, and be supportive. The positive energy you project will eventually come back to you 100 fold and until that time you can just be satisfied that you loved with all your heart.

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 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.