Well, its been EXTREMELY busy here recently, which is why I haven't posted, for the most part!!
Lucas had his surgery on 8/3, it was delayed for a few hours due to them needing a bed for him in the ICU, but the surgery itself went well. He was in the ICU for 2 days due to some minor breathing issues (his vocal cords were swollen) and low and behold, my son now has teeth.... He cut his first tooth the Wed we were in the hospital. It was actually funny, it was during the nurse shift change and he started screaming and thrashing around his crib (after having surgery on the bottom of his spine and his neck) the nurse asked if this was normal and then gave him morphine when I said it wasen't, that night, I felt his first tooth. Being in that hospital has made me aware of the fact that eventhough I might sometimes have a pity party, things could be worse, I witnessed things in that hospital that I'll never forget, things I still see when I close my eyes at night. On Thurs his roomate was a 2mos old girl that had the left side of her skull removed, it was 1 of many surgeries and her family couldn't be there, I mean she had no one except volunteers and nurses helping here. I still see her face and wonder all the time what happened to her. I've also learned that I'm alot stronger then I thought, I've never been a person that likes to see blood, it usually makes me weak in the knees, however, I've been able to look at his bandages daily, and now that they are gone, I can look at his incisions daily. All I can think of when I see them is when I watch NCIS and I see Ducky working on a dead body, they look like those incisions....
Now that he is home though, he is doing much better, he is able to move his head from side to side, sit in his walker and is in a self made "no bouncy seat" support group, he's the only member! I've also had to deal with wanting to "baby" him, and also reteach him that he can't have my undivided attention 24hrs a day like he did in the hospital. Dylan had a blast at his friend Conors house, thanks to Conors wonderful mom Krystal who offered to take him for me so wouldn't have to worry about him. She is a wonderful person who has made it so I never have to worry about taking Dylan to an appt unless I want to, she really has been a great help, she also allows me to "freak out" whenever I need to and dosen't take any of it personally. We've become great friends since Dylan and Connor started preschool last year. This year will be great also, he is starting soccer with Conor in Sept and they are also in preschool again together.
The Sat after we left the hospital we went to the beach for the day and had a lobster bake with my dad and his family, it was really fun and brought back alot of memories of when we used to do that every year, plus it was yummy.
Friday, 8/14 Lucas turned 1, it was kinda a weird birthday, it was poorly planned on my part we just had my dad and his family over for dinner and then had a cake. It made me yet again, realize how delayed Lucas is, I mean we had a birthday for a boy that not only can't eat cake, but dosent have any idea what is going on and just sat in an infant carseat and watched us eat cake and his brother open his presents. He wasen't even interested in playing with them. I guess it's moments like these that hit me the hardest, I tried to be happy about the fact that its his birthday, but then I look at all the milestones he's missed and realize he's really only about, what 4-5 mos, he dosen't eat any food, he dosen't sit independently, but he is now rolling on his right side with no help or coaxing and there is always his smile. Ok, I'm done the pitty party, I'm sorry. I was reading my own blog this evening and realized its mostly full of me complaining. I know it shouldn't be that way and I'm working on that, honest I am.
Today we bought Lucas an awesome new/used stroller. Its a Kolcraft Contours 3wheel stroller in ruby red. His jeep stroller is breaking mainly due to all his rocking, I couldn't get it to say in the upright position anymore.
I also wanted to take the time to say hello to Bumpa from Dylan, Lucas Me and Steve, he is in the hospital due to having 1 1/2 heart attacks and surgery during the last heart attack and we hope he is doing well. We miss you!!
Sunday, August 16, 2009
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It is really hard for me to watch video of Erik's 1st birthday (he'll be 5 in October). We had no diagnosis yet, but I knew something was horribly wrong. I opened his presents, too, just like I would for the next couple of years. I hated that. He still isn't really into toys. The next couple of birthdays might be difficult for you as they were for me -- but HANG IN THERE. He will progress little by little and really begin to enjoy himself. And you will never take that for granted. You will celebrate at his side and love every second of it. I'm so happy Lucas's surgery is over. I hope the healing is swift and comfortable. BIG HUGS.
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