Tuesday, May 26, 2009

Mmmmm, delicious.

This is too cute not to share. For the past couple of weeks, when Brooklyn sees pictures of food when we are reading her books, she tries to pick the food up off the page and eat it. It's hilarious!!! Now, is that a smart baby or what???

PS - Please try to ignore my glaringly pasty pale legs. Sorry about that. I sincerely hope nobody goes blind.

PPS - I promise a real post next time because I need to ask y'all whether I am fretting over nothing concerning Brooklyn's motor development. But right now, I need sleep!

Wednesday, May 20, 2009

ON THE CHARTS, baby!!!

We went to Dallas yesterday so that Brooklyn could see Dr. R, her gastroenterologist. My mom went with Brooklyn and I because Dave has started a new job and couldn't take time off yet. We had a really good appointment with Dr. R. Brooklyn had gained almost two pounds in eight weeks and weighed in at 18 pounds, 10 ounces! She had also grown an inch longer. The highlight of our day was finding out that SHE HAS HIT THE THIRD PERCENTILE CURVE ON THE GROWTH CHART!!! This is such a big deal for us! Brooklyn is on the charts!!!

Dave and I actually had predicted that she would weigh a little more than she actually did. She is looking so, so good lately. Over the past month, her little thighs have gotten chubby, she even has a little roll of pudge on each leg. I can no longer touch my thumb and index finger around the biggest part of her thigh. She has little fat creases on her wrists. I don't think that she will be wearing these size 3-6 month clothes very much longer! I am loving watching her gain weight. She is still considered tiny for her age...but this is amazing to me. I am constantly showing our friends her newly developed chubby thighs...my baby has never looked like this before! It's a thrill for me. It's a visual sign that her health is slowly improving and that things are gradually getting better for us. A reward for everything we have been through and how far we have come.

Dr. R was very pleased with Brooklyn's weight gain. He showed me some of Brooklyn's growth stats that I had never seen before. I knew that her weight was considered "not on the charts." I have seen her "own curve" plotted on the growth charts many, many times, several rows below the curves. But I did not know that in January of this year, she was considered to be in the 0.52 growth percentile. That is ridiculously small...I had no idea exactly how far below the curves she had been. In March, Brooklyn was in the 1.77 percentile. And yesterday, the 3.86 percentile. I wonder what the numbers were last year....he didn't show us that. I am sure they were even lower. But wow. The progress she is making. Dr. R said that he is much less concerned that Brooklyn will need surgical intervention now because she is growing well. (sign of relief!)

Dr. R is not changing up any of Brooklyn's reflux medications right now. She is still spitting up a lot. She alternates between swallowing it back down and actually spitting it up. He said that most children with severe reflux outgrow it between a year and 18 months. However, it is unlikely that Brooklyn will outgrow hers within the next few months because of her laryngomalacia and stridor. He said that the laryngomalacia is further aggravating the valve that causes her reflux. Dr. R also said that if Brooklyn has not outgrown the reflux by the time she is two, it is a sign that she will probably continue to require medication for at least several more years.

The only change that Dr. R made was to take Brooklyn off of her milk of magnesia. She also has to take Miralax now and we are to give her a teaspoon twice per day instead of once per day now. She has been having problems with constipation since late December. The combination of Miralax and milk of magnesia has been the only thing that has worked for her. If she does not get BOTH of them each day, she cannot go. But Dr. R was concerned about having to continually increase the dosage on the milk of magnesia. So I am hoping that this change doesn't get her back off track again.

Anyway. It was a really good, really encouraging appointment. Dr. R told us to keep up the good work again. Dr. R wants me to call him after we see Dr. G2 (pulmonologist) next month. He may increase one of her meds (Bethanechol) at that time. But we don't have to go back for THREE months!

Sunday, May 17, 2009

Happy Blogoversary to me!

During the past year, we have come so far. We've grown from this:

To this:

Thanks, bloggy friends, for being there for us to lean on.


Amanda and Brooklyn

Monday, May 11, 2009

My disappointing Mother's Day

Today it is dreary and drizzly outside, and it just seems appropriate. I am just having one of those days.

Mother's Day was really disappointing for me. My husband is usually so great about making me feel special and planning sweet little surprises on important days. But yesterday, he said nothing about Mother's Day. We had been up for a couple of hours when I finally asked him if he knew what day it was. "Yeah, it's Mama's Day," he replied. And that was that.

I didn't need him to make a big huge deal out of the day or anything. I didn't need him to buy me an expensive present or plan anything elaborate. I just needed him to acknowledge the day. To give me a card from my daughter or something like that, since she isn't old enough to do so herself. Just to tell me that he knows how hard I am working to be a great mommy to our sweet baby girl. Just....something.

Instead, I pretty much ended up feeling like I must be doing such a shitty job as a mom that I wasn't worthy of a Mother's Day sentiment. If it wasn't for my daily dose of the emotion-stifling Lexapro, I think I would have been doing a lot of crying yesterday. Last night, while my husband slept soundly beside me, I laid in bed staring at the ceiling fan and feeling increasingly worse about myself and my (lack of?) motherly abilities. Today, I feel like I have a hangover from the sadness and disappointment of yesterday. And the weather seems to understand.

Thursday, May 7, 2009

Prayers for a friend

I just wanted to ask everyone one to keep Ava and her sweet mommy Hope in your thoughts and prayers. Ava has been inpatient at Cincinnati Children's Hospital all week having all kinds of tests and procedures so that her doctors can figure out exactly what is wrong and how to treat her. So far, the tests have revealed a few "new" problems for little Ava. She is also having a hard time with the anesthesia that they keep having to give her and is having issues with her heart rate and seizures because of it.

Hope found my blog not long after I began writing it. Little Ava has laryngomalacia, as we came to find out that Brooklyn has as well (Hope has called Ava and Brooklyn "malacia buddies." Cute!). She has been a great source of support for me and I am so thankful for her friendship. She is one of the only people that I have felt like completely understands everything we have been through with Brooklyn. I don't know anyone in real life who has been through what we have been through. Hope, you have been so wonderful. I wish I could be there with you this week.

Please pray with me that the doctors will be able to figure out exactly what Ava's medical needs are. Pray that she will stop having reactions to the anesthesia and that these procedures won't cause her any pain or discomfort. Pray for peace and strength for Hope because it is so ridiculously stressful to have a baby in the hospital, especially when you don't know what is wrong. Brooklyn has had a lot of these same tests and procedures and I know that it is so hard to watch your little baby be put through all of this. Also, please pray for wisdom for Ava's doctors - that they will be able to discern what Ava needs and take care of her in the best way possible.

And I'm sure Hope wouldn't mind if you stopped by her blog and let her know that you are thinking of her and Ava!

Monday, May 4, 2009

Swine fear

It may seem out of character for one who worries as much as I do in general, but I truly do not typically freak out over health scares that are hyped up by the media. Bird flu, West Nile virus, etc....those illnesses didn't scare me.

But this swine flu/H1N1 threat is a different story. I didn't think much of it the first couple of days that the news mentioned it. Wednesday night, I got a little stressed over it because the first 6 or 7 minutes of the news was dedicated to nothing but swine flu coverage. Then, Thursday morning, when I was driving to work, a nationally syndicated radio show read this email, written by a Texas doctor, on the air. And I began panicking. OMG, my baby. What if she gets it? There are people who have contracted this virus clinging to life on respirators? Brooklyn already has an airway defect. What would happen to her if she became ill with it since she already has respiratory problems?

Then I heard reports that it is usually the 2nd or 3rd person in a household who contracts the virus who is at the greatest risk. Okay, so that means that if my husband and I bring it home from work and Brooklyn gets sick after us, she would be in the worst shape. Then reports that the 23-month-old in Houston who died from it had "an underlying medical condition." Well, great, so does my baby!!! This is something like my extreme fear of RSV over the winter months, but amplified. We managed to escape RSV, with the help of Brooklyn's Synagis shots, and now there is this. And they are saying things like the virus is contagious for 2 days before the patient shows any symptoms and that the germs live for 6+ hours on all surfaces. OMG.

On Thurday and Friday, cases of swine flu started popping up locally. A couple of schools in the area closed down for the next 10 days. All UIL sports games and academic meets were cancelled for 2 weeks statewide. As of today, there are 300,000 Texas students home from school because their schools have been closed because of either confirmed or "highly suspected" cases of swine flu.

Since I had heard that supplies of Tamiflu and Relenza might run out soon, I decided to try to get a prescription for Brooklyn so that we would have it filled, just in case. Brooklyn's pediatrician has been so good to us, and has been so considerate of her special medical needs, so I was sure he would call a prescription in for her.

Nope. I got a call back from Dr. A's nurse saying that they were not prescribing Tamiflu for anyone as a prophylaxis. If Brooklyn shows signs of the flu, she will have to be seen by Dr. A, they will do a test for H1N1, and then prescribe Tamiflu if necessary. I thought that I had gotten this answer because Dr. A's nurse hadn't actually talked to Dr. A and said that it was for Brooklyn because of her laryngomalacia and how bad respiratory illnesses could be for her. But it's so ridiculously hard to call a doctor's office and actually talk to a doctor, I didn't know when/if I might be able to talk to Dr. A himself. I then called Dr. G2, Brooklyn's pulmonologist, and Dr. R, her gastroenterologist, with the same request. I got voice mails from nurses at both doctor's office that were nearly identical to the message Dr. A's nurse had left me earlier. I mean practically verbatim.

So now I am convinced that the CDC or some other government agency is not allowing doctors to prescribe Tamiflu or Relenza without a documented diagnosis of H1N1. I know that they are trying to keep close track of every case of H1N1 so that they can monitor the virulence and how quickly it is spreading. I understand that they don't want to run out of the drugs because too many people wanted it "just in case," but can't you make an exception for babies and children who have the potential to suffer the most from the virus? I don't care if I get a prescription for myself or for Dave. I just want one for my little Brooklyn. I am truly terrified that she will catch this, and so scared of what it could do to her.
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