south davis

I have been so busy that I haven't had a chance to post anything in a long time. For those of you who don't know, Grey has been hospitalized every month since January. His immune system is fine, we have just been unlucky. The doctors say that it has been the worst RSV/flu season in a long time, and we have caught everything that has come along. For my other children it is just an occasional cough or sneeze, but for Grey it is very dangerous. His lungs are very weak and he can't cough on his own. Without coughing any respiratory illness can turn into pneumonia. This last visit was the longest. We were at Primary's for a week and 2 days. Finally the doctors told us about South Davis Community Hospital. It is a rehabilitation/ permanent living facility for the severely handicapped. At first I was devastated to think about sending my baby to a permanent living facility, if only for a few weeks, but we really had no choice. He was well enough to come home from Primary's, but he was still requiring so much care that there was no way Joe and I could take it on ourselves. He has fallen behind on physical therapy and eating by mouth since he has been in the hospital so much in the last 6 months, and South Davis has the means to work on physical therapy and eating while doing all of his treatments. Joe and I toured South Davis and decided it was the best option to get him back on his feet. The day he was transferred I was emotionally and physically exhausted after sleeping in a chair for a week and making this tough decision. It was late in the afternoon when I stepped out of the elevator into the pediatric unit. I had toured the facility the day before, but most of the children were hidden away, so to speak, in their rooms. This time they were all out in the hall. Although I knew this was a permanent living facility for severely handicapped children I wasn't prepared for what I saw. There were many teens in wheelchairs yelling, drooling and making repetitive motions. I had to walk through many of them to get to Grey's room. It was shocking and for some reason really scary to me. I had been alone, in the hospital for a week, I was tired and overwhelmed and I snapped. I began to cry uncontrollably and had to walk outside to my car. With nowhere else to go I got in my car and sobbed for about a half hour. I called Joe and expressed how I couldn't imagine leaving our baby there, but we had no choice. I composed myself as much as I could and walked in to kiss Grey goodnight. He was happy and none the wiser to the situation. The staff was friendly, and I knew I had to leave it in the Lord's hands. I kissed him and left to go to my friend Carri's house 10 minutes away. I consider it a huge blessing that I have a dear friend that lives that close to the hospital. I have know her my whole life and consider her family. Carri's mother was there waiting for me when I arrived with open arms. I have always felt like she is second mother, and I needed a mother at that point. We talked and she made me laugh, and I felt much better. The next day I went to visit Grey and was immediately hit by the smell of "rest home" when I entered the building. I felt sick to my stomach, but put on a brave face. When I walked into the pediatric unit it felt different than the night before. There were still children in the hall yelling and drooling, but it wasn't scary. The sun was pouring in through the window in Grey's room and he was talking to himself while watching "Blue's Clues" on the TV. He was excited to see me and began talking loudly saying "dada" and "mama" as if to tell me about his day. He was happy and content. I felt a world of relief. Since then he has been working hard to gain strength and he can sit up on his own now! The kids have come up to stay with me at Carri's, which they consider a mini vacation. Carri's friend got us passes to Lagoon, which is 5 minutes from the hospital. We had a wonderful time and I was still able to visit Grey that day. Though it has been crazy (excuse the pun) it has not been too bad. I am so grateful for Carri who has so willingly taken my family in, and made me feel so at home. I have come to love South Davis. Though I still don't like spending hours there, I at least know Grey is loved and taken care of. The staff is amazing. There is so much love for these children. They treat them like their own. There is a teenage girl who is mentally handicapped who sits by the nurses station everyday. The nurses chat and treat her like she is part of the conversation. The other day I noticed she had got a haircut and it was blown out all nice and sassy. I told her it looked good and she smiled. There is another girl that is probably the most physically handicapped I have ever seen. She only has one finger, but her fingernail is painted bright pink. They obviously love these children, and I am growing to love them too. I am learning their names and when I come I say "hi" to them. They stop yelling for a moment as if they are responding. Grey is everyone's favorite, of course. The nurses fight over who gets to take care of him. I know he is in the right place. I already see all the good that has come out of this experience, and I am so grateful for the opportunity to become stronger, I truly am. Grey will be coming home on the 19th of June and we will be whisking him, and the other kids, away on a much needed vacation to Disneyland. Thank you for all the prayers and support. We love you all so much!

notorious B I R D

And now that I have a moment while Greyson is sleeping in the the hospital bed next to me and the ICU is relatively quiet, I will tell you the story if the notorious B I R D...

It's more than one bird actually, dare I say all birds, but I'm getting ahead of myself.

Anyone who knows Joe and I, knows we love birds. They are the only animal we have ever had as a pet, in fact the only animal we would ever even consider having as a pet.

Exhibit A:

We got our first bird right after we got married. Jubees, short for Jubilee, was like a child to us. She would sit on your shoulder and make kissy noises. We tried to get her to talk, but she was too stubborn. However I did record her talking once when she thought we weren't listening. When Miles was born she became insanely jealous. One day her jealousy over took her and she flew out the door. I didn't realize this for days and called for her over and over. I finally put it together after a while. I made missing posters trying to find her, but it was no use.

Exhibit B:

At Christmastime we make our house a cozy wonderland inside and out. We came up with what we considered a cleaver idea using pvc pipe wrapped with red and white rope lights to look like giant candy canes under the eaves of the roof. We enjoyed the look all season long. When it came time to take them down Joe found one to be more dirty than the rest. Looking inside the tube he couldn't see the other end so he hit it against the ground vigorously to get the dirt loose. 6, yes 6 dead birds fell out of the bottom. Loving birds the way we do this was a devastating shock.

Exhibit C:

We were thrilled to finally buy our first house, though it wasn't the newest of houses it was ours. After a month or two the dryer began to stink. Yes I know that is disgusting. Which is why I immediately called someone the clean out the dryer duct. After the nice man checked it out he gave me the bad news, Birds had made a nest so big in our dryer vent that it eroded away some of the pipe letting hot, moist, dryer air waft into the attic. Lovely.

Exhibit D:

For about a month now the boys have been waking up to scratchy squeaky sounds coming from the dryer ducts. A few days ago the dryer started acting sluggish again and the smell began to return. Those dang birds! (though I didn't use the word "dang" in my head). You won't get me this time!! I thought. I went outside and pulled the dryer tube out of the wall and began shaking it aggressively. A few measly twigs fell out. So I reached my hand inside and pulled out what could have easily filled a bucket full of twigs grass feather and all the makings of a nest. Bah! I was so mad I took some screen and screwed the opening all shut.

Exhibit E:

Directly after the final dryer stand off I was enjoying the springy day working in the yard. Suddenly I felt a wet "plop" on my nose. If you couldn't guess it was bird revenge in the only way a bird knows how, to poo on my face.

Why do you want to hate me so bad when all I have is love for you, you mean naughty birds. Ah well, they are smart little suckers aren't they.

sugar doll

Thank you to my sister in law for giving me the "Sugar Doll Blogger Award". I don't really know what it means, but I'll take it! If it means that your blog is awesome then I have to give one to my sister Lilly, because her blog is hilarious and cute!! Thanks Beck!

the diagnosis

Things have been very busy around here since Christmas. Greyson was admitted to the hospital on his birthday, January 4th, for pneumonia. While we were there his neurologist came to see him as she often does when he is admitted. She had the long awaited genetic test results. I thought that it would be another dead end, as usual, but this time there was big news. They had found a diagnosis. The condition is called Nemaline Myopathy. It is very rare, in fact there are only 143 cases of it in the world right now. The condition is typically genetic, and therefore the rest of our family will need to be tested for Nemaline Myopathy. There are different onsets of the condition. Infant, childhood, and adult. Childhood, and adult onset usually shorten the lifespan, by 10 years or so, and the symptoms are generally mild. Infant onset is the most severe, and is usually fatal. Of the 143 cases 27 are infant onset. Most of these babies have died. The infants usually die in the first year. However, if the baby can make it past that first 2 years of life, the symptoms typically diminish, and the child can live a fairly normal life, with a normal lifespan. It's incredible that this information came on his first birthday. The doctor told me that the reason he is still alive is because of all the preventative treatment that we have done for him. I know that all the prayers and faith of our friends and family have been the biggest factor in his survival. We have worked hard to get him this far, but we can't do everything. Luckily the Lord makes up for what we can't do, through the prayers and faith of loved ones. It is nothing short of miraculous the way the Lord works. If we had known the diagnosis from the beginning we would have given up. We would not have been aggressive with preventative treatment. We would have just made him comfortable assuming we would loose him in that first year. Because we did not know, we fought hard. There have only been 4 babies to survive this on record right now. He will be the 5th, if he survives. Through prayer and faith the Lord has lead us in the direction we need to go each day. Whether it be the hospital or treatments at home, it has worked. The doctors, and physical therapists are amazed at his progress. He is getting stronger each day. We continue to work with him, and he continues to fight this uphill battle. There has never been a more sweet and strong child as Greyson, in my eyes. He fights through numerous uncomfortable obstacles each day with no complaint. He is a wonderful, amazing child who teaches everyone who comes in contact with him the lessons of patience, perseverance, and love. We hope and pray for the best outcome. Your prayers are greatly appreciated. Thank you all for your service and love, we could not do this without you. We have learned so much from this sweet spirit already, and hope to be graced with his presence for many years to come.