November-

November is Prematurity awareness month. I have stopped trying to do 30 days worth of awareness because I don't have time any more. I guess life use to be a lot less hectic. But I will try and give a few facts and figures and of course, the gift that keeps on giving, just life in our house.

This month has already started off with a bang and with Prematurity at the head front. Sometimes I forget that people don't know that the issues we have all stem from one big thing.

Prematurity.

For the last few months we have been on a medication called Lamictal. It is a anti seizure drug with many uses. We have a very conservative neurologist and he wanted to try it with Tyler. We started with 5mg. Which was a VERY conservative dose. We were to up it every 2 weeks and I always upped it on a weekend so that we could watch for the common rash that can occur. The common rash, is a life threatening rash. You know.. no big deal... ugh! I was worried. But as we went up there was nothing. Not even a spot.

We got up to 25mg 2 times a day. We had a mix up with the pharmacy and with on call doctors and our neurologist and with nurses calling back and it was a big mess. But right after we got back from our vacation we had run out of meds and had some issues getting more. After a run around we had 3 kinds called in. I kept giving him the 25 mg's as we had been until the first of November.

We had noticed a few marks on his body when we moved from lamotrigine ( the generic) to 25mg of actual lamictal, and I took him in. The pediatrician said he felt it was just dry skin and eczema. So we treated it as that. Then I upped the script over the weekend to what the neurologist had actually written on the script. He upped it to 125 mg 2 times a day. And watched for the rash again on Sunday. A few more spots were there so I added more eczema cream. Monday I sent him to school

Monday afternoon the school nurse called and said he had a rash. I kinda of rolled my eyes, but went and got him. She was right and he had a rash. We took him right over to the peds office. And we decided that we would rather talk to the neurologist.

Our neurologist was so upset that he wrote the wrong script. it wasn't that big of a deal and I wasn't horribly mad but he wanted us to be admitted. He was worried it would progress faster and he wouldn't be able to breathe and it would be a bad deal. He also didn't want us in the ER. He called and got us a bed and they called us when the bed was ready. ( I must say, that is MUCH nicer than siting in the ER waiting.)

So we were admitted to Cardon's Children's hospital. I am glad that we were not having to go clear into PCH. We have done all our brain surgeries at Cardon's children ( formerly knowns and Banner Desert Children's hospital) and they have a brand new hospital that is only about 5 years old. We were on the oncology floor so that we didn't catch anything extra. 

Tyler was fine with being at the hospital. He was a good sport. Grayson did really well, but as soon as Dallas got there he was ready to leave and wanted to get out of there. He doesn't really like it and has anxiety about hospitals. 

I stayed like we normally have me do. I made the arrangements for Grayson for the next day and got everyone set up and then we waited. Tyler needed a IV. That is the WORST part of the entire stay. The poor kid. The nurse needed a blood draw with the levels of both our seizure meds and we also needed a IV or a route for meds incase he stopped breathing or had a seizure. 

The blood draw went ok but as they were trying to tape everything for the IV they pulled out the IV and had to re poke. Tyler was crying, I was crying. I was sobbing. He was sobbing. Then we had to splint his arm up so he wouldn't pull everything out. 

We got his normal meds in and we got him to go to sleep and he did a great job of staying asleep. He woke up around 3am and wanted to watch a movie but quickly went back to sleep. I even had a nice little corner to sleep in.

The next day we were able to go home. We were taken off the drug for a few more weeks where we will start again really slowly. We will see the doctor before we start and will probably have a few more appointments with blood draws to see how we are doing.

Having a kiddo that has seizures is scary. Having the drugs going through their body to help them is scary. All because the gift of prematurity is the gift that can keep on giving. Prematurity is not just having a little baby. It is truly is not worth having a baby before it is suppose to be here.

*Yawn*

For five years I have dreamed of a time that Tyler would 1) sleep in his own bed and 2) sleep through the night. I has happened a few times and those times are GLORIOUS. Though sleeping in his own bed through the night usually means he wakes up around 5 or earlier. But it is pretty peaceful for me.

During the last week we have had pretty good sleeping. He gets into my bed early enough that I can fall deep asleep before being pounced on and woken up. But 2 times last week he was up before 5. A very lovely early start to Disney Junior but I can't handle that early. It makes me have morning sickness and throw up for the rest of the day.

A few times we have had such a bad time getting him to sleep that when he is finally asleep we don't want to wake him even if it is going to make him run late for the bus. The bonus is that he actually gets his sleep.

Yesterday, after a fun filled grandma and grandpa and kids day Tyler was exhausted. The kids left and we tried to unwind. It ended in tears, crying, gagging and the works. Finally I just picked him up, put him in the tub and walked away for a second to get his stuff. After meds and more crying and screaming he decided to sleep in his bigger bed.

He ended up with me 5 minutes later and slept until the "daddy get back." D put him back in his bed around 10. For the next 3 hours every 7 minutes Tyler was up and in my room. Around 1 we were both to tired to fight him and stuck him in our bed.

Knowing that we are going to be bringing a new baby home makes me a little nervous. I have been sleep deprived for 5 years. I guess what is a few more. If anyone has suggestions that we haven't tried ( we have tried melatonin, crying it out, benadryl, benadryl with melatonin and crying it out and we are even currently on MEDS used to sedate kids) send them my way. If not at least take the kiddo so I can get some rest!!

Where do you sleep?

After Ty was well enough to be on his own after surgery we started putting him back in his room. Then he started sleeping in there, THROUGH the night. He wouldn't come in here when he woke up for the day. Leaving his sweet mother to sleep through the night too.

So for almost 3 weeks we have all had great sleep ( except for Dallas) and our wake up has been around 7:30 or 8 and it seems to just work for now. When days are a little more crabby I go ahead and stick a nap in around 11 or 1 and work with the crabby pants as needed through the day. We haven't needed many naps this week but he has been playing with friends MUCH more through out the day so he does come in a bit tired.

Well 3 nights this week Ty has come into our room to sleep. The first night I had been out of the house and Dallas said Ty came down the stairs and didn't want to go to his bed. The next night he made it to our bed he had wet his pants and he had gotten wet and I took them off and he just fell asleep on my pillow leaving me to deal with pee bed. And last night he went to Dallas and he was put in the middle of both of us. I had no idea he was there until I was getting constant back pushes.

So it seems he was sleeping great, Dallas was gone a few night, and we tend to have him go to sleep later in the night. It feels like musical beds.

I would dare say not many of us in this house has really slept THAT great.

BUT we are planning a camping trip for next week. I am actually excited to take my boys camping in the REAL mountains. Better get our fishing licenses.

Life without tonsils

Ty is still sick and crabby. He has a few good hours and then it is crying and sad and just plain sick. There are times throughout the day that he won't even swallow his own spit. He tries to talk to me and ask for something or say something and it just RUNS out of his mouth. At that point I realize just how little he is drinking and eating. I offer and offer and offer but he just doesn't want to swallow.

The other day he woke up screaming at about midnight. He was REALLY upset. We figured he was in pain. We only do Tylenol in the day and then loratab at night. Yesterday I made him take a nap and it seemed to help a lot by the end of the day. It made him get up around 5 am though.

Today, well today was another story. The 5 am started it all. Dallas was up so he took Tyler. I made the toot breakfast and offered a coke. YES a coke. He won't drink anything without fizz . The bad part, if I put ice in it and it runs out of fizz he wants more.

He didn't eat his breakfast. BUT he asked for pizza around 9:30 am so I made it for him. He pieced on it for 2 hours. Seriously 2 hours! Who does that?

I cleaned up my pantry and had swept the floor. Ty helped. It was in a pile when it started but he did such a great job!

He was sweeping it all around. The nice pile turned into this:
But soon he was over helping mom and off we went to watch a movie cause frankly it was such a HARD job. He got all settled with Mickey, Blanket and my computer.

See this thing he does with Mickey and his nose... he just has Mickey rub his nose. And then he has to make sure that Mickey is aware that he is ON TV.

Mickey is such a star!! He gets front row seating to all his events! And when movies are done he is quickly replaced with:

Undies were carried around when Mickey was not being used. When the camera came out Ty would count to three and say CHEESE!!

But at the end of the day he is EXHAUSTED. He cries, he is sad and most of all he doesn't feel well. He lays down on his frog and he gives it a squeeze.



And sweetly falls asleep!



He was later sweetly woken up but he was a bear. He hardly had anything to eat or drink and we sent him to bed dosed up on all the meds he would take. We hope he starts feeling better soon.

Oh... How we miss our Tonsils !

My Happy Holiday Weekend

I have had such a wonderful weekend I don't want it to end. I go back to work all day tomorrow and I am wishing that I was staying home with the boys. I am wishing that I was staying home and decorating and loving and smiling with Tyler.

Some pictures of Thursday!

Thanksgiving:

Tyler decided to help us Cook and clean so he played at the sink.

He was so funny. As he was playing in the water he noticed he could put his head under and get it wet. He would stick it under, then turn around and giggle. It was so funny. We felt so blessed.

I went to work and wanted to hit the black Friday sale. I got just what we had decided on and at a great deal. I ended up working and being gone 17 hours. Today my feet hurt so bad and I am falling asleep. I am heading to bed!

But first a little preview of the one thing that has helped me "like" Christmas

I am slowly losing it!

I am trying so hard to keep up the facade. To keep the positive. To keep the pace with all we have to do.

I am tired.

We were doing PT 3 times a week for water therapy, regular PT, Speech once a week, OT and eye therapy. We have cut the water therapy down but we still do the others. With me working at night part time and the time of the day Ty is up for the day I am tired.

Although I am "taking medication" I am now wondering if it is working correctly. On Tuesday I literally couldn't keep my eyes open. I have no motivation and my ability to multi task and keep my appointments straight and make it to my appointments is slowly NOT working. I wonder what happened to the very put together mom that was happy, cleaned, cooked and knew where and when we were suppose to be somewhere and never missed.

I sure hope we find her soon!!!

Sick and Tired... a rant.. by ME!!

I am sick and tired of being sick and tired. I feel great until the end of the day then I am sore and tired. I sit down in the day and yep.. I fall asleep. I try to have patience with Ty and low and behold temper tantrum central. His newest antic is to bang his head on the floor. Not just the nice carpet but the TILE in the KITCHEN. Yep.. I followed him in their this morning when he was mad and grabbed his expensive head as he banged it on the floor. That is a 100 k head.. Makes me SOOOO mad.

Dallas got hurt so he is in a lot of pain. It is frustrating because I know he is not feeling well but at the same time neither am I. I really really need a day to sleep in before I go back to work. I really NEED it.. I swear.

Speech was so frustrating for me today. He never seems to improve. I am so glad he can at least show me what he wants and can follow directions so that I am not so freaking frustrated. I know that it is just life. GRRRR!!!!!

It is frustrating to still be waiting on his walker. It has taken almost 3 months from the time we started this process for a 200 dollar piece of equipment that I volunteered to pay cash for. But because they have a contract with our insurance company Ty has to wait. 4 more weeks at least.. how frustrating for a small mount of Independence.

Oh not to mention I am sporting the Herpes look on my face. It is horibble and awful this time around. Not to mention it hurts like a beast. I just want to hide and cry...