And Now For The Blessings

I have really been in a funk the past few days and have found it almost impossible even to smile and have really struggled to fight back the tears. I got some much needed rest and woke up today with a new attitude and somehow I found my smile and laugh again and for that I am so grateful. I do not like to be sad. Kenneth and I got to go out the other night without the kids and went to a wedding for a firefighter friend of his. It was good to be out and around adults. His mom kept the kids for the night. Then last night, somehow, both kids slept all night in their own beds. I feel like I have won the lottery! Anyway, enough about that. I want to write about how CP has blessed us because it seems there is always a downside to talk about but I want everyone to know there is an upside as well. First, there is my marriage to Kenneth. After Anna's diagnosis things really went downhill for our marriage. It seemed at one time that separation was inevitable and that making it work was almost impossible. Neither of us were raised in homes with divorced parents and didn't want to raise our kids that way but we could not see the light and figure out how to make it work. Looking back I really think it was more me, but we each had our share of the blame. We fought to stay together though and make it work and God blessed that and together with him our marriage is stronger than ever before. The other night at the wedding there was this 21 year old throwing herself at Kenneth and while I pitied the 21 year old I was able to laugh it off because I know there is no one else Kenneth would rather be with than me and that I feel the same towards him. We have been through too much together and starting over is not an option for either of us. We have had to learn to rely on each other in ways I never imagined. I think any life changing experience (death, serious illness, etc.) can teach you things you would never learn any other way and a special needs kid can do that too. Friends- I have learned who the true ones are and who the ones are that can't be bothered with my life because it is too complex, or too sad, or too different from theirs or whatever. I have had people who I felt were friends really show me their true colors and not necessarily in a good way. I have had people who I never thought cared really step up and I have met people I would not have ever met had I not been reaching out to other families in the same position we are in. I have had to learn patience, but believe me, this one is still a work in progress. The patience factor comes at me from so many angles. I have to be patient with Anna- patience to do things at a slower pace and patience to realize I can't fix everything right now and that sometimes the best thing to do is nothing at all. I have to be patient with therapy and realize she can't be in all therapy all the time and that the results of therapy are not immediate. I have had to learn patience with Carly and the way she deals with how our lives have changed. Mostly, patience with the Lord to be still and calm and to wait on Him because I know he will make all things right in His time. I grew up with a fairly affluent lifestyle and have had to learn to let that go. There were times we could barely afford to feed Anna when we were spending over $500 a month on just formula. I had been off work for 6 months and had over $100,000 in medical bills and we did not know how much of it the insurance would cover. Things were really tight. The bank sent us a foreclosure notice on our house 2 different times but we are still in our house and caught up on our payments. We were sued by a credit card company for failure to make payments. It is a hard thing to accept that you cannot fulfill your obligations but again the Lord provided and we were not made to repay the money we could not afford. It isn't that we didn't owe it, we did. We were just in a really bad spot and were having to chose between feeding our child and getting her to the specialists she needed to see and making credit card and house payments. I learned the importance of tithing and that God will provide, and he always does. So my faith has grown by leaps and bounds. I have always had a relationship with God but had never really been in a spot where I felt I *had* to depend on Him and Him alone. When all of this stuff with the pregnancy and Anna's diagnosis it was then that I felt I *had* to lean on Him for the strength. There was no human strong enough to guide me through the rough waters, He was the only one. And last but not least, I have really learned to be thankful, for everything I have because it could be gone in an instant...

Anna

Jack is in the corner
The dish is with the spoon
The sheep is in the meadow
The cow is on the moon
But I am here with you and I believe
There's no place I'd rather be
And a promise not to leave you
Is a promise I can keep

You're my muse
You're my rhyme
You're the fire warming this heart of mine
When you hear me say I love you
Anna, do you know how much I do?

So I watch you from a distance
Getting lost within your world
You pretend to be a princess
As you flutter and you twirl
Fragile as the flower in your hair
Dancing in your castle, unaware
That a single day without you
Would be more than I could bear

Little Anna, little star
That is what you really are
Cross my heart and hope to die
You're the apple of my eye.

Micheal W. Smith/Wayne Kirkpatrick

A Day In the Life

Many people have asked me lately what our day to day life is like so I thought maybe I should have a post detailing this. This will probably ahve to be a 2 part series. One part on the day to day and one part on the emotional dealings. Every morning Anna wakes up anywhere between 5-8 am. It is usually closer to 5 but sometimes we can get her to go back to sleep. We count those mornings as sheer joy! We get up and then Anna gets a bottle of soy milk- she is a big fan of the Very Vanilla Soy Silk. She cannot have cow's milk or other milk products or she gets a scald looking rash on her butt and eczema all over her legs and an ear infection to go with it. She is still taking a bottle for many reasons but the most of which is that she is still so skinny that I need to be sure she gets a certain amount of calories a day. She will not drink milk from a sippy but if I use the bottles she will drink it. Right now the calories are way more important than weaning from the bottle so the bottle it is. She will drink about 4 ounces. She occasionally will drink 6 but has for the most of her life only taken 4. If you think about how tired your mouth gets after chewing for a long time then you kind of know how it is for her to eat or drink anything. It takes a lot of muscle control and she is easily tired from it. Then she is off. She is the busiest kid I have ever met. She is not the typical kid in that way. Carly was busy too but Anna is like a supercharged Energizer bunny, all of the time. We work some on signing and speech as the day goes on. We spend some time with her fussing and me going down the list trying to figure out what she wants. It is like when you have a new baby and they cry and you start with are they hungry, are they wet, are they cold... You keep going until you figure out what makes them stop crying. Anna is smart and knows what she wants but has difficulty communicating that so it is like playing the guessing game but she knows what she wants, she just can't tell me. She has about 8 words and 5 signs and the rest is just a guessing game. She can say Daddy, Carly, kitty, please, thank you, drink, yes, and no. She rarely is able to say Mama although I have heard it once or twice. She can sign milk, more, hungry, drink, and sleepy. Kenneth is determined to teach her the sign for "kiss my butt" but I am doing my best to discourage that!! Then it's lunch. She pretty much plays most of the afternoon. As she starts to get tired in the afternoon she starts to fall more. You notice her left leg turning in more and her left arm/hand becoming much stiffer. Her hands will go back to the fisted position they used to always be in. She will sometimes take a little nap but most days it is impossible to get her to take one. On Monday afternoons she has speech therapy for an hour. By the end of that hour she is completely exhausted. She has dinner at about 7 then a shower. Then the fun begins. We crush up 25 mg of Trazadone and 6-9mg of melatonin and mix it in applesauce. We beg and plead with her to eat it and she usually does. Occasionally we have to force it in her mouth. Then we pray...hard...that she will sleep. Then she gets 1/2 cap of Miralax mixed in another bottle of milk and she takes the bottle. She has battled constipation from the very beginning of her life. I did the best I knew how to do but she ended up with fissures from extreme constipation. There was a time when every 3 days we had to dig out an impaction. She would scream and cry and bleed and then I would cry and feel terrible for hurting my baby. This went on for about 6-9 months until we finally got her Miralax dose to the right point. We tried everything else we knew to do but it just wasn't getting better. Then there are the doctor visits. They seemed at first to be never ending but things have gotten better. It is hard with her because she does not feel pain the same as others. I have to always be second guessing if she is hurting or not because unless she is in extreme pain she will not fuss or cry. I seriously believe she could break a bone and never give us any indication. And with the doctors, you have to be very careful. When you have a child with a brain injury doctors are a huge part of your life. But if you allow one of them to mess up you will never be able to do anything about it because they will say your child was already damaged and that whatever happened was just due to the CP. Nobody will be held accountable. And if you think the doctors know what to do with special needs kids, well, you are wrong. The parent has to become the expert and navigate the system. You take a crash course by reading everything you can get your hands on and then do the best you can. CP kids are basically not insurable. Luckily Kenneth and I have group insurance through our jobs but if we did not there would not be hope of getting private health insurance for her. The average cost of raising a kid with CP until age 18 is like $900,000-nobody wants to willingly and knowingly take that on. And we make too much money for any government funded programs. She is not dumb, her muscles just don't work right. I expect her to graduate from high school and go to college just like any other kid. So you see she is a normal kid, but then again she is not. I hope that as she grows older she feels more like a normal kid than not. I hope that she will be oblivious to the stares that I already see. I think mostly the stares are because she is so tiny but I don't really know that. I am used to her because she is like she has always been and I have no idea how an outsider sees her. I do not know if her stiffness and wide and clumsy gait are noticeable to the untrained eye. Her doctors records say she is "dysmorphic" so I don't know if others see that too. Mostly, I don't care. She is my Anna and I love her. Do I wish things were different? Yes and no. I will not lie, she is exhausting beyond what I have the words to express. I wish things were different for her so that she would not have to struggle so hard for the simple things we all take for granted. I wish Kenneth and I could have more of a break sometimes. But this CP, it has brought us blessings too. More blessings than I can count...

Politically Correct

Anna's Sunday School teacher called to let me know it was time for Anna to promote to the next class but that she um, well, uh, um, well, uh "just isn't ready." I already knew she was not up to speed with the kids in the next class and that is ok. I actually prefer for her to be where she fits in best, even if it is with the babies. I felt sorry for the teacher who likely got "picked" to be the one to call and tell me my kid is behind. It must have been hard for her! She is such a sweet lady and I love her honesty. Honesty is such a hard thing to come by these days. I just wish that when people are wrong they could just say "I'm sorry." It certainly is not the easiest thing to say but when it is needed, it is just needed. It can be so healing to hear some one sincerely say they are sorry. So if you wrong someone don't be afraid to say you are sorry, you just might change their life and yours too. I mean, really, wouldn't that be the honest thing to do?

Not a Millionaire

Frustration Level- High. Patience Level- Low. These are where my gauges stand right now. I tried to get Anna's medical records today and learned I would have to be a millionaire to acquire them. It is insane that illegals can get free health care and I have to pay for my health care and then pay again for the records about the care I already paid for. A chart the size of Texas at $1.00 for the first page and $.50 for each additional page equals, well, um, more than I can afford. I am trying to collect the records for my own files and also because we are switching doctors. All of us. I will no longer pour salt in the wounds that are still so fresh. I feel like Anna's CP was preventable and whether I am right or wrong that is how I feel. Every time I walk into the same doctor's office that delivered Anna it is such a painful thing. I am angry. I have tried to live in the fairytale world and pretend like everyone did everything they could and that things just happen but the facts just don't support the fairytale. I have read until I am blue in the face and everything I find supports what I think is right and I am so mad. I have been afraid for a long time to let myself get mad. I am afraid if I allow myself to feel the rage that I know exists that I will go to some dark place and never be able to climb back out. The weird thing is that I have not been mad at God. That seems to be people's natural reaction but it just isn't with me in this case. He didn't make questionable decisions, people did. But enough about my anger. Brad was here again on Monday and speech went well. He was supposed to start coming every other week but after further consideration he decided he needs to be here weekly. He basically has one year with her until she ages out of Early Intervention and he feels it will take a visit a week for that full year to get her where she needs to be. I am glad he is willing to give her what she needs. She really likes him and I think she will make great strides with him as her teacher. Her not sleeping was apparently not a phase and so we had to make more med adjustments. We stopped the Tranxene and started her on Trazadone. I did not really want to but felt there was not a lot of other choice at this point. She is sleeping so much better and even sleeping all night in her own bed about 50% of the time- that is huge for us!! She is not wanting to eat much again and losing weight- that is bad for us!! She had finally lost her FTT (failure to thrive) label but is headed quickly back in that direction. Oh well, you can't have it all. Carly is doing well. She is excited about school coming up but terrified of the shots she needs to be able to go. She is signed up for ballet and now soccer too. I had always said one activity at a time but she has sacrificed a lot for her sister so I feel like every now and then she needs to get a reward for it and she really wanted to play soccer. It is never dull around here. Oh and congrats to my sister and her family on the birth of their 3rd child, Charles Wesley Braswell. He was born a week ago today and weighed in at a hefty 8 lbs 6 oz and 21 in long. He is adorable and I am so happy for them!

Standing On His Promises

I learned a long time ago that it isn't really fair to be upset with someone and not be willing to tell them about it. If you do you are holding them responsible for something they possibly know nothing about and if you don't give them the chance to explain or perhaps even apologize then you are just as much to blame as they are. I had been holding someone responsible for things and not discussing it with them for a long time. Today, unplanned, the discussion occurred. It was not comfortable. It was not fun. It hurt like hell. But I did it and even though I didn't really get the answers I needed I think I feel better anyway. The truth is I don't think anybody but the Lord above has the answers to the questions I have. So I will keep praying and someday, somehow I will find peace with the situation. My heart will stop breaking. This might not have been the Lord's will but he will make it work for his glory. He promises me he will and I will continue to stand on that promise, he will not fail me.

No Rest For The Weary

Therapy. That is where I have landed. I have fought it and put it off despite Kenneth's multiple requests that I go. But finally, it became crystal clear to me that this is real and it is not going away. The longer I refuse to face the pain and pretend I am OK, the longer it will take to find some healing. I have pretended for the past 13-14 months since Anna's diagnosis that I am OK for the most part. And I am, some days. Other days I am not. So therapy it is, and I actually left my first session feeling a little better. I look forward to going back this week. Anna had speech on Thursday instead of Monday because Brad (the speech therapist) had strep and was kind enough not to share it with us. Thanks Brad! Anna was much more attentive. We worked mostly on the "b" sound. Anna did not really ever seem to get it during therapy but this morning while I was sleeping she got right up in my face and said "Boo!" I was surprised on so many levels and thrilled to hear the use of the "b." Brad says Anna's main communication will be verbal but that it is going to take us awhile to get there. He is also teaching her signs and she is using those more and more. I think she is starting to get the connection between expressing what she wants and getting what she wants. She has been not sleeping again despite med increases. The other night she was awake for the 3rd or 4th hour and was able to sign to me that she wanted some milk. Her not sleeping is different now than before. Before she would wake and then go back to sleep and wake and go back to sleep all night about every 2 hours. She would be up for about 15-20 minutes each time. Now she wakes somewhere between 1-2am and stays awake until 4-5am. We are exhausted, no doubt, but at least we had a couple of months of sleep instead of the straight 17 months of no sleep we had before. We are handling it OK for now, but I do not know how long that will last. The neurologist's next step is to stop the Tranxene and try Trazadone. I am not sure if I am OK with the Trazadone. I cannot really explain why I am not OK with it, I just have my reservations. We will continue on with the Tranxene and melatonin for now and hope this is just a phase that will pass. At least when she is awake she is happy. I know it could be worse! (But it could be better too!!)

Kubler-Ross

Anna's second speech therapy session was today and did not go near as well as the first one. She was tired and cranky and is cutting another tooth so she was not all to willing to cooperate with Brad, our ST. Last week she was excited and was able to keep her attention focused on "speech" things for almost 30 minutes. Today it was more like 30 seconds of attention for every 5 minutes that passed. It's OK though, she is still only 19 months and I do not expect her to sit still for 30 minutes. Besides that, it is hard work for her and I know it wears her out. Today while she was busy not cooperating I left the living room and went to our bedroom to see if me not being present would help. It did not but as I sat there thinking about how we really should not have to be doing this I got mad all over again. When I learned about the stages of grief in my umpteen million psychology classes it seemed they taught us that the stages were always done in order and that they were sort of "levels" and that once you reached a level you would not be doomed to revisit that level. I was so very wrong. It seems the stages are cyclical and I am curious to find if there is an end to my cycle. It is not that I feel sorry for Anna or myself or our family. It is not that at all. I am happy we are who we are but sad at the same time that we are who we are. I know the Lord has a purpose in all of this and that his hand guides us. I know he does not want me to be sad and I know he does not want me to grieve. But I am human, and so I do. I find myself bargaining and thinking that if someone could just go back and make a better decision or a different decision that all of this would end. Time does not go back though and so here we are, unable to go back and ask for second opinions, unable to bring Anna into this world earlier to giver her a better chance. I have so many questions that I really want answered. They have nothing to do with blame but everything to do with a mother who needs to understand on a scientific level why certain decisions were or were not made. If I can understand things scientifically then I can better make sense of them emotionally. This society prevents that dialogue though. You can't ever ask a doctor why they did or did not do something even if you don't have a litigious bone in your body because doctors always must assume you are out to sue. I think that fear of being sued prevents so much of what needs to be said from actually being said. I just want a rationale for the decisions made- not to judge right or wrong, just to understand better. I need therapy...

We Are Complete

Done. Officially done. That is the status with child bearing in this house. I am a little sad but mostly relieved. Kenneth and I had some serious talks and just decided the risk is too great for us and for our kids. It was confirmed tonight by Carly that our decision is the right one. She had asked me if you just got a baby when you wanted one or if you had to ask God for one when you pray. As I am not ready to explain sex to my 5 year old I simply told her you just ask God for one and if he feels you need one he will give you one. So her prayer at dinner tonight was not a blessing for our food but rather a plea to God to "please not give my momma any more babies no matter how many times she asks. Amen." She then again reminded me she is "never going to have a baby because I do want want to go away to the hospital for a long long time." It isn't that a 5 year old should decide everything but it is just that her words prove that the emotional toll is just too great. She turned 5 yesterday and I cannot believe it. She had a great party on Sunday with all of her best friends in attendance. She was sure she was already 5 on Sunday because according to her birthday parties only happen on your birthday- makes sense to me. Anna decided to really excel at gymnastics on Monday and jumped out of her crib and landed flat on her face on the floor. I was in the kitchen and heard an unmistakable thud and found her. She developed bruising on her nose and under her eyes and started to scare me with her crankiness as the day wore on so we ended up in the ER having a CT of her head. It was negative thank God and so we headed home. It pays to work at the hospital, we were in and out of the ER quick and that is a rarity. EI came out on Tuesday and evaluated Anna for speech. She will have speech therapy once a week for 4 weeks then every 2 weeks after that until December when we will reevaluate. I really like the speech guy, Brad. He really seemed to know his stuff and seemed genuinely excited to help Anna. He will come to our house and I can only hope Anna can cooperate. The funny thing is that this past week she has really started to talk a lot more. I am excited about that but still know speech is necessary at this point. I had a crazy day at work and do not really expect tomorrow to be any better but at least I won't be in charge tomorrow. I must go to bed now, 5am comes quick...

Destin Fun

More Good News

We took Anna to her GI appointment on Friday. It was just a routine follow up. She was, get this, 22.6 lbs. We received a congrats from the doctor. Anna has gone from below the 5th percentile in weight to the 25-30 percentile. She still has some stomach issues but we will continue working on them and figuring out how to cure what ails her. I won't get into her GI issues on here too much because in the years to come I fear she will come back and kill me for it. It suffices to say high muscle tone sucks and it doesn't just stop at the arms and legs!! We only have to follow up with the GI as needed. Yippee for crossing another doctor off of the list. We pretty much just see Neuro and our FP now. She is still sleeping at night and actually spent the night at her Meme's last night. It was her first night away from home without us. She enjoyed it and we did too! Carly felt so special having Mommy and Daddy to herself but was super happy to see her baby sister this morning. My prayer for them is that they will always love each other like they do right now. I know that my sister has been my rock throughout my life and I hope they are that for each other as well.

Freak Out

Again, it is no secret that I want another baby...or so I thought. All was well until I went ot bed last night and proceeded deep in my head somewhere to have the ultimate freak out. If I am pregnantthis month than I will proceed and be happy about it. If not, I think I am done. I started thinking about the possibilites and the flood of emotions took me by storm. The more I read about APS (antiphospholipid syndrome) and pregnancy the more I think I need to be done. The chances of bedrest are high and the thought of being away for so long again is terrifying. The thought of not bringing home a baby when I come home from the hospital is not a happy thought. The thought of a baby dying due to a crappy placenta is too mcuh!!

My Carly

My Carly. I could not love her more. I could not be more proud.

The Truth, Or Something Like It

Work was tough yesterday. Discussing DNR status with 3 sisters, one of whom is pregnant with her first child, regarding their 54 year old mother who is eaten up with cancer is never easy. But it is necessary and the doctors skirt the issue and the nurses must do the deed. And so I did. And it took all I had in me not to cry. I do not know what it is that causes me to attach to some patients and not to others but this one has broken my heart, again. It penetrated the wall. I must reinforce the wall, there was not supposed to be a case that could break it and 2 cases this week did. I cannot get so close, not again, and I say that every time and yet it keeps on happening. Maybe it is that I'm human, and maybe that is what makes me the nurse I am, but it sucks! And so I was driving home and thinking about how much the day had sucked but how blessed I was to have lived through it and then I called the man to tell him I was on my way home. I always do that. I don't know why, I just do it out of habit I guess. So then he tells me Anna is at the park with Nikki (our neighbor). I ask if Carly is there too and he tells me no, she is with Kinsey though at her house and Eric (Nikki's husband) is watching them. I found it curious that Anna was with Nikki, but not Carly. It was then, after much stuttering, that I got the full story- or so I thought. Kenneth tells me he was outside with the girls and he got busy doing something for just a minute and the girls disappeared. He apparently didn't notice until Nikki called to ask Kenneth if he knew Anna was at her house. He tells me he just kinda said "no" and that was the end of it. I could not believe that #1 he was not watching her close enough and #2 he was dumb enough to tell me about it. We discussed it in detail and I think got to the bottom of it and I was assured it would not ever happen again. When I got home, totally unrelated to the previous story (or so I thought), the house was immaculate. The toilets were sparkling and the house was filled with the aroma of pledge. He had finally done all that I had dreamed of...he cleaned the house. So tonight Nikki and I were outside watching the kids play and kicking back a few cervezas when I told her I was so sorry about the disappearing Anna incident. She laughed and told me it was fine and how funny it was when she called Kenneth to tell him Anna was there and his response was "Oh, shit, I am over here on my hands and knees cleaning like a bitch and didn't even notice she was gone..." Ah, once again it is proven- there is nobody else that can do a mama's job... for I can clean and watch kids. I laughed my butt off. We leave in the morning for Florida and I can't wait...

Still Sleeping

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.

Getting Better

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.

Not So Much

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!!!

Success

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...

Overjoyed

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.

Preeclampsia Awareness

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!!