Sunday, May 31, 2009
What a difference a week makes!! Anna continues to sleep at night with a little help from my pharmacy friends and I could not be happier. She goes to bed about 8:30 and sleeps until 7-8 the next morning. Kenneth and I are new people. EI came out this last week and reevaluated Anna (you know, the eval they were supposed to do last month). She scored quite well on all things except communication. They have decided she no longer needs OT so that service is gone. I am not really too upset about it. After the comments made at our last visit I was not all too ready to welcome the OT back into our home. She came with the nurse to do the re-eval and made a few snide remarks like, "Have you been back to the light lady yet?" She was of course referring to the other new OT. They think she needs speech therapy now. That will probably start sometime next month. I really am not worried about her speech at this point but will take the help if they are offering. They tried to check her hearing but Anna would not cooperate. They said if her speech has not really picked up in the next 3 months that we need to take her to Cook's to have her hearing evaluated. I think she hears fine. For once, I am really not worried about something. I am not sure what to do therapy wise- I have one eval and OT saying she needs therapy (who is paid nicely by myself and my insurance), and one eval and OT who says there is not any therapy needed (paid by the state who is always low on funds). We were supposed to start the new therapy in July so I still have some time to think about it. Carly graduated from Pre-K last week and had her ballet recital last weekend. Pictures- yeah, I'll post those sometime. We leave Wednesday to go to Florida for a few days and I can't wait, I need a vacation. The definition of "life is not fair" is one of our patients at work right now. A 42 year old man had an unexpected cardiac event and will likely not survive. He has 2 young kids and a sweet sweet wife. We have all of these overdosed druggies that come in and they get to live. Sometimes life just really isn't fair.
Friday, May 22, 2009
After the last post I went on to have a full crying breakdown that lasted the better part of that day. it was one of the worst days I have had in a long time. As with all good things, all bad things must also come to an end and the period of not sleeping did just that. I called Dr. Hernandez and reported our troubles and that the Clonidine had made things worse. I let them know just how bad I was really handling all of this. He called her in some Tranxene. The first night on it was better but still not where we needed to be. Luckily the first night Kenneth saw how I was doing and told me to take some Ambien and go to bed and try to sleep through whatever went on with Anna. He knows that even on my nights to sleep, I don't, because even though I don't have to get up I still here her and wake every time. I slept really well with the Ambien. The next night we tried a combination of melatonin and Tranxene and voila- she slept. She woke up once, we put her in bed with us, and she slept the rest of the night. We had tried putting her in bed with us before but it did not work. It is working now. I don't care at this point where she sleeps as long as she does sleep. She is waking up at about the same time in the morning and doesn't seem to have any after effects from the medicine. So we are doing better. EI comes out this week to redo Anna's evaluation- supposedly. I'll believe it when I see it.
Monday, May 18, 2009
The melatonin was great- for about 2 days. Anna slept well those first couple of nights and then it was back to the same old song and dance. I wrestled with the idea of whether or not I was really ok with medicating her for sleep and in the end decided we had to try. It is a scary decision. It wasn't like whether or not to give Tylenol or something- this just seems so much bigger. And then I wonder if I am doing it truly for her or am I doing it for me and is that selfish and ... Then there is the medication itself- will it hurt her, are there enough long term studies... In the end I have to trust Dr. Hernandez and that he only wants what is best for us and that he would not give her something that would knowingly be detrimental to her in the future. So he called her in some clonidine. Yes, I said clonidine. It is mainly used for hypertension in adults but also works to calm sleepless children. I went to pick the medicine up and was surprised to find she would be getting 1/2 of the adult dose which seems like a lot for a 20 lb kid. Again, I just have to trust. Scared as I was, I went ahead and gave her the medicine and was suddenly overcome with a sense of relief that for the first time in 17 months Anna was going to sleep through the night- and so was I. I crushed the pill and gave it to her in applesauce. She took it like a champ and within 20 minutes was out. She has never really had a problem going to sleep though, the problem is staying asleep. Then Carly and I went to bed shortly thereafter and I was so relaxed just knowing what kind of night lie ahead. Then it happened- she woke up. Not just once but every 1- 1 1/2 hours all night. At one point I was in tears. The hope was crushed and things were worse than where they started. After 3 nights of this crap I am so frustrated and desperate and hopeless. I am in a panic. I am afraid I will never sleep again. Even when she gets older and can get up on her own is she ever going to be safe in the house or will I always be listening out for her getting up? I am afraid this will never get better. I am not usually the hopeless type- I really always believe things will get better but in this case I am just not sure. I find myself resenting Anna but I know deep down it is just fatigue and not really her. I know she didn't ask for this either. She is so cute and sweet and adorable and lovely and all of the things a girl should be and I don't want to be mad at her but I don't know what else to do. She is just a baby and I am just a crazy mother for being mad at a baby who can't help what she's doing. My heart breaks because I hate Holland right now and I just want to go back to the way things were before preeclampsia and cerebral palsy took away the normalcy we once had. I have called Dr. Hernandez office to report that things are worse and see what we do next. I'll let you know what they say. Please, God, if ever I have cried to you before I am crying to you now, please help us!!!
Thursday, May 14, 2009
The Preeclampsia Awareness Walk was a huge success! Thank you again Nicole, Tim, and sweet baby angel Cooper for your undying efforts to make sure no other families have to endure the pain. Thank you again to those who donated in my name to try and save the lives of mothers and babies across the world. In your prayers please lift up the family of Kayleigh Anne Freeman who lost the fight to prematurity due to preeclampsia. It is amazing how such a tiny person can have such a huge impact! The only snafoo in the whole walk was the drowning of my blackberry which had to be fished out of the toilet. It has since been replaced and I have since decided I probably need therapy for my crackberry addiction. I almost didn't make it through those few days waiting on the replacement. I have never wanted so badly to run up and hug and kiss the FedEx man before- it was nutso! Mother's Day was fabulous! I got a much needed nap, beautiful flowers, a handmade gift from Carly, a seafood lunch, and a grilled dinner compliments of my honey. I was also supposed to work that day but got put on call- what a dream come true. We have decided to not keep Carly at the Angel Academy for the summer and to let her enjoy her last school free summer at home playing outside like a kid should. She is so excited. Her PreK graduation is next Thursday and I am afraid I will cry like a big baby. I cannot believe my little baby will be starting school next year. I am so proud of her. I worry sometimes that she doesn't know how awesome I really think she is because I am too hard on her at times. She acts so grown up and I forget that she is only 4. I am trying to lighten up and think I am getting better at it. I think maybe that is just the way it is with your first kid. I was watching some things Anna was doing yesterday and thinking I would have spanked Carly for much less at that age. Her graduation has a 50's theme and she will be wearing a poodle skirt, I can't wait to see it. Anna is still just being Anna. What else can I say. She is amazing and there is no other kid like her. She is so sweet and so mean all at the same time. She did well with the melatonin for a few nights and then it's back to not sleeping. She is cutting molars so that is some of it but I am afraid that is not all of it. I went ahead and called Dr. Hernandez's office to see what he wants to do from here. I am hesitant to start meds on her but know we all need the sleep. It is hard on Kenneth and I and I am quite sure it is not good for her little body either. Carly asked Anna to "please sleep through the night because it makes mommy so much nicer," so I guess it is affecting her in some ways too. I am going to have lunch with my friend Joanne today and am looking forward to some "me" time. Off to the shower I go...
Friday, May 8, 2009
Anna and I spent most of Tuesday at Cook Children's for her check ups. We saw ortho in the morning, enjoyed lunch with my friend Amy, and then saw neuro in the afternoon. We had two great appointments and only good news! The ortho appointment was made after taking my concerns about Anna's feet and legs to the new OT. The ortho seems to think the problem is actually with Anna's hips, not her feet, and that it will correct itself over time. He said he thought we already had enough to worry about and that he would not add to that list of doctors and worries. I really liked him and would not hesitate to use him again if we needed to but I honestly hope to never have to see him again. We had lunch at the Bluebonnet Bakery and i had the most delicious chocolate cupcake for dessert- the best I've ever had! Then it was off to see Dr. Hernandez. I was so glad I opted to go back to him rather than seeing Dr. Marks. It wasn't that I didn't like Dr. Marks, he was fine and seemed knowledgeable enough, but I just really clicked more with Dr. Hernandez. He showed me Anna's MRI and the "cyst" that the nurse and Dr. Marks had told me about. Turns out it isn't actually a cyst at all- it is just a hole in Anna's brain. It is small and of no consequence. It is just a spot where the brain tissue didn't come together. It is an "incidental finding." He said the mylenation pattern is much improved from her previous CT where he said her whole frontal lobe was not really mylenated at all. He said he felt Anna was doing well and that we are on the right track. He seemed surprised that she is doing so well. He encouraged us to start the intensive therapy as soon as possible and to see if we can get her in a gymnastics or tumbling class to help with her coordination. I told him that Kenneth and I do not know how much longer we can stand Anna not sleeping without us having a mental breakdown. I am not asking for pity but imagine how tired you are with a newborn getting up about every 3 hours and then imagine doing that for 17 months because that is where we are. We are so exhausted! He said we should try melatonin first and I told him that I had already tried that. He gave us a much larger dosage range and said to try it for a few days but that if it doesn't work to call him back and he will call her in some Clonidine or Periactin to help her sleep and in turn help us sleep. he was so kind and understanding and I am so thankful for that! we are using 6-9mg of melatonin a night and so far she is only getting up once now instead of every few hours. we are overjoyed and feel like new people- so refreshed. Tomorrow is the PE awareness walk. Kenneth has to work but the girls and I will be going. Carly is excited to get to help raise money so other kids 'won't loose their mommies in the hospital for a long time." She is such a sweet girl! I love my kids so very much and am so blessed to be their mom on this upcoming Mother's Day. I will take some pics to post of the Mother's Day gift my sweet Carly made me at school. On this upcoming Mother's day please also remember those who have lost their babies- they are still mothers, too. Well, I need to get to bed so I am well rested for the walk. I typed this quickly and did not proofread so please forgive the errors- I know they are there! Goodnight.
Sunday, May 3, 2009
May is officially Preeclampsia Awareness Month. In honor of that I urge you to visit The Preeclampsia Foundation and educate yourself about the signs, symptoms, and consequences of preeclampsia, HELLP, and other hypertensive disorders of pregnancy. Even if you are not pregnant or becoming pregnant you probably know someone who is. In addition, my family will be walking in the Dallas/Ft Worth Preeclampsia Awareness Walk next Saturday. I know it is a last minute, but it is not to late to register or to make a donation to the foundation. You can visit the walk website here and either register to walk or just donate. Any contributions will be appreciated and you never know whose life will be saved by it. Thanks in advance!!