When to become a bitch to benefit the health of your child...

So where do I start. Hmmm. When Brooklynn was born, they were giving her Similac Advance in the NICU. She did not tolerate it well. After we brought her home and after talking it over with her Pediatrician, we switched her to Similac Alimentum. She tolerates this much better! (Yes, I wanted to breast feed but the doctors wouldn't even let me attempt it. After consults and medical supplies, I pumped for her as long as I could.) To shorten my story, Brooklynn at 6 months old now, is still on Similac Alimentum. It is 20 calorie formula and she gets 31mL/hour for 20 hours a day through her Gtube. As time goes on, I have upped and upped the volume on my own by just figuring out when she would get hungry and not getting enough. (Her GI doctor should have been telling me all along when to up it and to what.) Im pretty sure this is where we've maxed out for the moment at 31mL/hr. I've tried to up it but her tummy is only so big! She can only tolerate so much and when she can't, I back it back down to the max that she CAN tolerate. This is the time where she's supposed to be getting baby food. She cant. She just failed another swallow study a week ago and can still have nothing at all by mouth. She aspirates EVERYTHING! So what to do? Well, we can't up the volume and we can't feed her baby food or anything thickened through her tube or it will clog. We have to up the calories!!! Allllll these problems are the problems for her GI doctor. We haven't seen her GI doctor since May 19th and aren't scheduled to go back until August 20th! ARE YOU KIDDING ME!!!!! We have had to wait 3 months to see her GI doctor again! This is ridiculous! This baby see's 9 different doctors, and except for her 2 geneticists (who we only see once a year each), we see her GI doctor the least! HELLO!!!!!!!! This is most of her problems! Sure she still has a tethered spinal cord and needs a knee reconstruction but those are quick fixes with a surgery and boom! Healed! As quick as she aspirated during her swallow study, this baby is going to have her Gtube LONG TERM! It could be another couple years before we take it out. On top of all this, she's constipated! GI GI GI!!!! I have attempted to call her doctor and get some answers 5-6 times in the last couple weeks. This baby is HUNGRY! I have told them this over and over and over! I can't just concoct my own recipe and assume it's going to turn her 20 cal formula into 24 cal's. I can't just feed her baby food (which by the way she lovesssss. :-( ) and take the chance of her getting pnemonia or upper respiratory issues. I am at a loss! A couple weeks ago I was told I was going to get a phone call right back with the recipe for 24 cal formula...no call back. Last week they told me they were going to send me by mail the recipe for the 24 cal formula....nothing! I am not kidding when I say...Brooklynn is getting sick! She is crying at night because she is so hungry. Her eyes are red and puffy. So yesterday...what did I do, I gave her banana baby food! I had to! She is starving! I would rather deal with an upper respiratory infection than have her starve! So I called her GI doctor again this morning. In tears of course. Upset and threatening at the same time! Oh I can yell and cry at the same time. Call me talented. Ha. I told them that this was the very very very last chance they were getting to help me. I told them that instead of having to make her own formula, I wanted to use Duocal in her formula to add more calories which is what I've been told quite a few others have done with their children and it has worked well. I also told them that I am demanding for Brooklynn, my 6 month old who is growing slow and needs her intake changed often, to be seen in their office every 6 weeks at the LEAST, preferably every month! NOT every 3 months! I told them if this doesn't happen, and Brooklynn get's sick because they were able to help her and do something about this but didn't, I will switch doctors and report them to everyone I can and know that can make their lives hell! You have no idea what A bitch I can be when it comes to my children! And if it's your fault that she is getting sick and not getting enough nutrition, when you can clearly help her...I will do what I can to make you miserable! So of course, again, her nurse says that she PROMISES she will go talk to her doctor and call me back TODAY! HAHA! Thanks for listening and I'll let you know the outcome. I have been told by numerous other physicians and hospital staff that she is the "best!" Should I not receive a call back, I will let you all know who she is!!!

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around….and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

By Emily Perl Kingsley

Dear God, Why?

Dear God,

You could offer me a billion dollars, a lifetime of bliss, and the promise of a baby girl who was 100% completely healthy and she would live to be 102, yet, I would not give her back to you. I would not trade her for the world. But I will tell you this. I hate RTS. Absolutely hate it. I will never understand why you put these children through what you do. Why the pain and suffering? Why make life so much more difficult for them than it should be? I don't understand it. I don't expect I ever will. I have kept my faith that you have given me and my family the strength to deal with this and to help Brooklynn through all of her struggles, but why have you given her these struggles? None of this makes any sense to me. I am trying to find the answer to this. She is the most beautiful amazing little girl I have ever seen and could ever imagine. She is always so happy and so sweet and she can put a smile on the face of anyone! And I mean...ANYONE! She smiles and a stranger walking by will stop to talk to her. Did you do this because it's true, nobody is perfect? You made her so beautiful, friendly, loveable, and just truly amazing. Is that why you had to throw RTS in there? Because she couldnt just be who she is without the struggles. I am keeping my faith in you, and I hope one day that you will show me the answer to this. I thank you for what you have given me. But why have you given Brooklynn what you have given her? Why have you had to make her life so much harder?

Love,
Katie

A whole new view...

I am completely exhausted today, although Brooklynn's first day of physical therapy went great! It was more of an evaluation, but I learned a lot of neat new tricks to try with her to help strengthen her muscles. Brooklynn was a total groucho though. Her tummy wasnt feeling so good this morning so she cried a lot. When I say a lot, compared to a lot of other babies it's really not that much. It's just that Brooklynn only lets out an actual "cry" about once every 2 weeks. Usually she's a happy content baby. Im sure the people in the waiting room just LOVED us today. Haha. I know it's a lot harder to have to listen to a baby cry when that baby isn't yours. Anyways, they used the 2nd Peabody test to evaluate her and she tested on a 3 month old level for stationary and reflex (her alignment and moving her limbs and head, etc.). Unfortunately she only tested at a 1 month old level for locomotion. But hey, that's why we are there right? Today gave me a whole new grain of hope for us. I was seeing the things the therapist was doing with Brooklynn and thinking to myself that...wow, she should get this in no time! It all looked simple enough and Brooklynn was responding very well to her tactics. She was doing all the "right" things. It really was great and I just think that this was such a huge step for us. Therapy is one of the most important things for a child with RTS and I am so glad to have finally made it to this point. I know it might seem crazy to others that a 5 month old has already begun therapy, but we all take for granted how important it is and how much work it really is on our childrens part to be able to do these so called "simple" things. I know I did with my son. It all seemed to just come to him. With Brooklynn it takes alot more thinking and effort on her part. It's not as easy as we all think it is. We never really realize how important it is for them to be able to hold their head up, roll over, push up with their hands, sit up on their own....even just to be able to move their neck and head to look from one side to the other to be able to see who is talking to them. These little things are so important to our children and really set the ground for the bigger things in life. You have to master all the small steps before you can walk to the potty on your own, go on a family bike ride, play jump rope with the neighborhood kids, run on the playground with your best friend, be able to go swimming when you take a family vacation. All these big things are what we, as adults, just do. We dont think about it, we just do it. Could you imagine not being able to do these "simple" things? Could you imagine not being able to get up and go to the bathroom when you need to, or even just be able to look to see who it is that is talking to you. I couldn't. Thanks to Brooklynn, I don't so much take the small things for granted like I always have in the past. I am starting to appreciate the simple things I never did before. Thanks to Brooklynn, I can now view the world in a different light. She was given to me for a reason. I think this is one of many reasons. And she is one special little girl.

A frustrating day...

I'm slightly frustrated today. Trying to get all our things in order, we've recently had A speech therapist and a physical therapist come to our home to score Brooklynn on certain tests that we're needing. First the speech therapist did her test last week. Brooklynn scored on a level of a 3-4 month old baby. With how small she is, and everything she's been through....I was thrilled!!! Obviously she cant speak, so she is tested more on cognitive developement, etc. - following sounds, responding to voices, putting things in her mouth, etc. She did great! Well, today the physical therapist came out. He used a standardized Peabody test. He tested her on things like head control (holding her head up, turning to look at you when you speak), playing with her toys, pushing herself up from her belly, rolling over, etc. She's testing on a level of a 1 month old baby. :-( I have to keep telling myself it's really better than that. She actually has great head control and he gave her that. She cannot yet push herself up, she can roll from her back to her side and back to her back, but she cant yet fully roll over. She'll look at you and find you when you talk to her, but if she's on her tummy, it's hard for her to turn her head completely so he didnt give her that either. With this test, unlike the one the ST used, it is standardized with standardized scores. So when he scored her, it's all or nothing. There is no in between. No points for being so close to doing some of these things. I just have to give myself peace of mind by knowing that she really IS so close to doing some of these things. Not only is she close, but does it matter? Does it matter if she does these things right this moment? As long as she tries, right? And she does. She tries very very hard. She has so much will and determination that I know in no time at all she'll be doing these things. She may not reach her milestones the same time other babies her age will, but she will. One day. In the end, she's a very happy baby. She smiles and laughs. And that's what's really important. She smiles and laughs.

Long Awaited Knee Results...

After the discovery that Brooklynn may be missing her left knee cap, we have received the long awaited results of her ultrasound. It turns out that she DOES have a left knee cap. :-) It is smaller than the right one and off to the side (dislocated.) This will require a knee reconstruction. One thing after another right? I always try to look at the positives of these situations, so here's what I've come up with....1. At least she HAS a knee cap which gives them something to work with. Still growing, I wouldnt have a clue what they would do had she not had a knee cap. With her 5 months old, seems like it would be almost impossible to have to put an actual knee cap in place that would be able to grow with her. 2. At least the Orthopaedic surgeon has agreed to work with the Neurosurgeon to complete both surgeries at once. At first, the Orthosurgeon was totally against the idea and wanted to do his separate from the Neurosurgeon. Thanks Mr. Mean orthosurgeon. Dont mind the fact that she has a syndrome in which anesthesia could be a scary process and it may be better to keep her from having to go under as much as possible. (The orthosurgeon is not my fav!) Surgery on her spinal cord and her knee will both be completed at the same time with the neurosurgeon going first. 3. At least we are getting all this out of the way while she is still so young and won't remember. 4. With any luck at all, hopefully we wont have any more ortho issues and can avoid this doctor. He can keep his arrogant attitude, bad bedside manners, rude office staff and 2 hour waiting room wait times to himself. We dont want it anymore. Soooo, there are my positives. I can also add that Egleston has the best grilled cheese sandwich I've ever had. Seriously. They put a couple different kinds of cheese on it and it is super yummy. But I would trade that for not having to go back ANY DAY! So September it is. Back to the hospital for another stay. It is a typical 36 hour stay required after surgery for her spine, and Im not so sure about her knee yet. Apparently to ask the orthosurgeon any kind of questions you have to schedule an appointment before surgery. Ugh. And then there is always getting her back up to a good amount on her feeds before we can go home. This time shouldnt be so tough though since this is not a stomach surgery like her last 2. Hopefully we'll have more answers soon. I'll let you know then. For now.... XOXO, Katie