Tuesday, September 29, 2009

September pulmonologist appointment

It has been nearly 2 weeks since Brooklyn had her appointment with Dr. G2, her pulmonologist, so I am way overdue in writing this post.

Okay. Brooklyn weighed just over 21 pounds and they said she was 30 inches long (but I don't think she shrunk an inch since she saw Dr. A a few days prior!) Her oxygenation was 99%, and the nurse didn't tell me what her respirations were :(.

Dr. G2 was happy that increasing Brooklyn's dosage of Bethanechol has helped her stridor so much. It was literally two and a half to three weeks after our last appointment with him in June, when he increased her dose 0.3 ml, that her stridor pretty much disappeared at night. It was pretty incredible. It caused a lot of anxiety for us at first, because hearing every noisy breath she took at night was our "normal," but we have adjusted and can sleep without hearing it now.

Brooklyn has had a runny nose for about a month now, and Dr. G2 thinks the postnasal drip may be cauing her to cough more thn she used to. So now we have to give her a nasal spray once per day. She hated it at first, and I wasn't surprised. I mean, the girl can't stand when I try to wipe her runny nose. But now she doesn't mind it and even thinks it's funny to sniff really loud a bunch of times after we put the spray in her nose.

Dr. G2's main concern was that Brooklyn's stridor still gets pretty loud with activity. She gets noisy when she is running around and playing and even when she is doing things that aren't particularly exerting or strenuous, like picking up toys or getting her books out of her basket. Her respirations get a lot higher and she gets much noisier any time she is being active. I don't think that her stridor is as loud as it used to be, but it's still there, and she's still obviously struggling.

Brooklyn also coughs and starts choking out of nowhere, even if she hasn't been eating or drinking for a long time. Sometimes we are just riding in the car and she will just start choking, and I have no idea why this is going on, if it is the reflux or if it is something else. She hadn't actually been "spitting up" with the reflux for a while, she had been refluxing and swallowing everything back down. Over the past week, she has started spitting up again. The reason why I explain this in conjunction with her pulmonologist's visit is that all of her doctors have pointed out that everything inside of her throat/airway area is just weak...it's all connected...and there doesn't seem to be a great deal of improvement.

Dr. G2 said that he is concerned that she may be exhibiting some signs of "airway reactivity." I didn't understand what this meant, and all of my Googling didn't really help me either. A nurse friend of mine said that her son has it, and it means that he has asthma-like symptoms and has to have nebulizer treatments and such any time that he has a cold or is sick. So is it basically a chronic respiratory condition? Forever? That's really discouraging to me...I had hoped that once Brooklyn outgrew her laryngomalacia, we would be done with all of this for good. Does anyone know anything about airway reactivity or reactive airway disease? Can y'all help me understand what this is? I know I have a few nurse bloggy friends out there ;).

Anyway, Dr. G2 started Brooklyn on steroid inhaler, Flovent. It says on her report that it will "provide anti-inflammatory control" and "hopefully decrease the noise and work of breathing that she has when she exercises." She has to take two puffs twice per day using this lovely little contraption called the Aerochamber. It's like a tube with an oxygen mask and a one-way valve on one side and a hole for the inhaler to fit in on the other side. They gave Dave and I a "training session" at the doctor's office, and oh my, does Brooklyn ever despise that thing. The training session consisted of me holding Brooklyn's body and head still, Dave holding her arms down, and the nurse holding the Aerochamber on her face while Brooklyn screamed and did her best to flail and twist away from the Evil Torture Device. We had to watch for the valve to go in and out six times. Once it finally did, the nurse removed the mask from Brooklyn's face. I leaned back in the chair and cheered for Brooklyn. "Okay," said the nurse. "Let's do the second puff." Oh, crap. And then there was round two of the battle royale.

The inhaler has been terrible for us. It was a horrible battle for several days, then seemed to improve for a few days. We even had two or three days with no tears at all!!! But...now she is back to kicking, fighting, trying to pull the inhaler out of the Aerochamber, trying to stick her fingers in the valve, trying to run away, twisting away from me, shaking her head back and forth, trying to puff the inhaler extra times....it is no fun at all for anyone involved. We have tried to make it as "fun" as we can...we put it on our faces, we let her put the Aerochamber on her dolls and bears, we breathe loudly along with her...I don't know. It sucks. It's like the return of the evil nebulizer. She never did get used to that thing, it always scared her. I was so happy when we were able to return it to the home health agency!!

So that was our visit with Dr. G2. He said that he was pleased with Brooklyn's progress, but....you know. Why can't we be done with this? It seems like with every appointment, we are adding and increasing medications, when we were told so long ago that Brooklyn would be so far beyond all of this by now. We go back in 3 months.

Tuesday, September 15, 2009

Early Childhood Intervention evaluation

The ECI evaluation is a state form called Developmental Assessment of Young Children (DAYC), and it covers five areas of development. Brooklyn had her evalutation yesterday, and it took about two hours. In order to qualify for services with ECI, Brooklyn would have to show a "significant delay" of at least three to four months in at least one of the five areas. She is 18 months old, and in an ideal world, she would score as an 18 month old on everything. But it's not, and here is how she scored out:

1. Cognitive - 21 months
2. Communication - 13 months
3. Social-Emotional - 11 months
4. Physical Development - 12 months
5. Adaptive Behavior - 12 months

So. "Significant delays" in four out of five areas. I really, really did not expect that, and it was like a punch in the stomach. Delays in one or two areas that overlap, yeah, okay, I understand that. But four???

The way that they explained it to me is that most of the problems go back to speech - that Brooklyn doesn't have a word for anything that she wants, that she doesn't initiate using words, that she doesn't show us what she wants or needs with speech or gestures. When she wants something, she gets very upset and just cries and screams, and we are just left to try to play the guessing game about what has her so upset. A major goal is going to be to teach her words and signs to show us what she wants to reduce her frustration and make things happier for everyone.

I know that my baby understands a whole lot of what we say but just can't say it herself, but yet the low "adaptive" score comes from her not understanding what things like "put the block ON the table" or "put the cup IN the bowl" mean. Also, that she doesn't play in "repeated sequences," such as rock the baby, feed the baby, burp the baby....three or four repeated things in a row. I think she seems awfully young to be doing things like that, but what do I know. I cried when she explained this part to me, because it makes me feel like I haven't been doing enough to teach Brooklyn things she should know at her age. The guilt I feel over this is ridiculous. I feel like I have failed my daughter, like a lazy, sorry-ass, unworthy mother.

There were a few things that made her score low that I honestly didn't agree with...like on the Social-Emotional section, at her age, they wanted her to prefer one parent over the other for things like feeding her, changing her, etc. She doesn't. The only thing is that she only wants me to read to her. They considered it a negative that she didnt have a favorite parent for these everyday tasks. That seems strange to me.

The good news from yesterday was that the speech therapist said that she saw NO signs of autistic behavior whatsoever. Thank you, God!!!!

For now, we will have a visit from the speech therapist once per month, the developmental coordinator once or twice per month, and the physical therapist has not contacted us to schedule anything yet. Every six months they will re-evaluate and see whether she is making progress.

The speech therapist said that this differs from a lot of programs where parents take their children to therapy twice per week or something like that. They visit less often and focus more time on teaching the parents strategies to use at home with the children so that the children can be benefiting from the therapy constantly, not just a couple of hours per week. I like that idea. I wonder if the physical therapy is going to be the same way. I honestly worry about that, because when I was supposed to do physical therapy stretches on Brooklyn's neck when she was an infant, it seemed to cause her so much pain that I could not do it. I cried more than she did.

Anyway, we did some initial goal-setting, and the speech therapist gave us just a couple of strategies to start using with Brooklyn at home (giving her simple choices, naming everything).

And that's where we are at right now.

ECI intake and Pedi visit

This time last year, it was pretty normal for Brooklyn to have tons of appointments, but our calendar doesn't usually look like this anymore! Anyway, I have a lot to catch y'all up on. This past week, Brooklyn had her Early Childhood Intervention (ECI) intake appointment, an appointment with Dr. A, and her evaluation with the developmental specialist and speech therapist from ECI (I'm going to do a separate post on the ECI evaluation.) And tomorrow she sees her pulmonologist, Dr. G2.

Wednesday, 9/9 - ECI intake.
It took about six weeks to get this appointment for Brooklyn. I did a self-referral on the advice of a friend who is a nurse back when Brooklyn was not speaking at all.

The developmental coordinator came to our house Wednesday. She had told me over the phone that the intake would take about 20 minutes and that we were going to go over my pregnancy, Brooklyn's birth, her medical history, and her development. I thought it was really funny that the lady thought it would only take 20 minutes to go over all of Brooklyn's medical history...and I was right, she was there for over an hour.

Brooklyn warmed up to her immediately and really seemed to like her. She didn't determine Brooklyn's eligibility for services or anything at that point, it was strictly an information-gathering type of appointment. She told us she would return with the speech therapist to evaluate Brooklyn the following Monday. She also took note of Brooklyn's head tilt and said that she would talk to their physical therapist about the possiblity of coming to evaluate Brooklyn at the same time as well.

One thing that I think is really great about ECI is that they are going to come to our house for everything...so, no other kids, no waiting rooms, no germs, no sickies!!!

Friday, 9/11 - 18 month appointment with Dr. A, Brooklyn's pediatrician.
Brooklyn weighed 20 pounds, 10 ounces (5th percentile) and was 31 inches tall (almost 25th percentile). This showed up as a weight loss of almost a pound since last month. But I told Dr. A that there had been a different nurse there at our last appointment, and she had Brooklyn stand on the older kids' scale fully clothed, instead of laying her on the baby scale in her diaper like they normally do. Dr. A said that the substitute nurse should have listened to me when I tried to tell her about how they normally weigh Brooklyn, so he marked last month's weight as "falsely elevated."

Dr. A said that Brooklyn's weight gain is not great, as usual, but it is "adequate." We will keep her on 2 bottles of increased calorie formula per day for now to help her gain weight.

He was very happy, as of course we are, that Brooklyn is starting to say some words again. She has about eight words she says now (baby, bear, bink, bib, ball, yeah, this, eye, dada...oh, UPDATE...this weekend marked the return of MAMA!!!!) He was very encouraged that she is making progress again, and said, "I don't know what happened to make her regress like that. To be honest, we'll probably never know what happened." According to his standards, Brooklyn is almost back in the range of normal speech for her age.

We told Dr. A about the ECI evaluation that we had scheduled. He really doesn't think that speech therapy is all that helpful in children younger than two, but definitely doesn't feel like it hurts. He thinks that ECI will be able to help Brooklyn more with her head tilt than with anything else. He does think she needs some physical therapy for it at this point. He said that she can correct it for short periods of time, she just usually doesn't. Another thing that he said we will have to keep an eye on is that babies with head tilts can have vision problems - sometimes one of their eyes will not focus as well as the other eye because they don't look at things straight on. He said that around her second birthday, he will refer her to a pediatric optometrist to make sure everything is okay with her eyes, but right now, he doesn't see any signs of problems there.

Brooklyn had to get her Hib vaccine and her flu shot. I asked whether she would be getting Synagis shots again this fall and Dr. A said that he would call Dr. G2 to discuss it with him. He doesn't feel like RSV would be as detrimental to Brooklyn's health this season as it would have been last year, even though she has not outgrown her laryngomalacia. He is not sure how much our insurance would fight us over it either.

I guess we will find out more at Brooklyn's appointment with Dr. G2 tomorrow.

Thursday, September 10, 2009

A half birthday for Baby Bear!

Brooklyn is a year and a half old today.
Is that even possible?

My Baby Bear is now an eighteen-month-old,
itty bitty little sweetie girl.

She is my little fighter, the strongest soul hidden within the most gentle, delicate little body.

And I could not love her more.

Happy half birthday, my beautiful, beautiful Brooklyn.
You break my heart and yet make it grow more every day.
You are my sunshine, my only sunshine.
You make me happy when skies are gray.
You'll never know, dear, how much I love you.
Please don't take my sunshine away.

Wednesday, September 9, 2009


I am 28 years old today.

The Blogger logo has a piece of birthday cake with a candle on it today. Do we share a birthday?


That sounds pretty lucky.

I hope it is.

I am having one of those days where it is hard to even force a fake smile.

I have got to do something to get myself happy. I guess first I have to figure out what that is. I need to find me. I used to know who I was. I used to have an identity.

Brooklyn is the only thing in my life that makes me happy anymore. She is the only wonderful, beautiful, bright, sunny spot in a world of gray. And that means that when she is unhappy, even when it is just grumpy/whiny/sleepy/frustrated typical toddler unhappiness, I am miserable. I feel like a horrible mother, a horrible person when she is not blissfully happy. I feel like curling into a little ball and disappearing. Really, I just want to go to sleep when it's like that (when Dave's home, obviously), but I already feel so guilty about missing out on spending time with my Baby Bear.

There is so much more to this, but it doesn't belong in this post. Most of this really didn't either, but oh well.

I hate being like this.

28 has to get better.

I want a happy birthday. I want a happy 28.

And I close my eyes and wish.

Friday, September 4, 2009

Night watch

My husband moves to night shift tonight. Full-on, 6 pm til 6 am overnights. And I am full of anxiety and fear over it.

I do not want to be at home alone. I am scared. No, make that terrified.

Let me explain why.

I didn't blog about it, but there was a night back in May of this year when a man tried to break into our house at three in the morning.

We were home, asleep. Our dogs woke suddenly and ran to the foot of our bed, barking wildly. We quieted them, then there was another sound. We weren't sure what it was. The dogs went crazy again. We got them calmed down again. Then there was another noise that sounded like someone walking on the wood laminate floor in our living room. "Okay," I whispered, "That sounds like footsteps."

Dave got out of bed and let the dogs down. They charged out of the room, growling and barking. But it was as if there was an invisible perimeter on the living room rug that they would not pass. They absolutely would NOT go any further. Dave picked up his flashlight and shone it around the living room. He would later tell me that someone else flashed a different colored flashlight on our dogs. He hurriedly came back in the bedroom. I was still sitting on our bed. "Call 911," my husband hissed. "Someone's here. I don't know if they're inside or outside, but someone's here."

"What?", I whimpered. "Brooklyn...Brooklyn...." Her bedroom is on the opposite side of the house. "Call 911. Now," Dave growled.

Dave grabbed his shotgun and went to the edge of the living room. He cocked it and roared, "GET OUT OF THE HOUSE!!!"

My trembling fingers fumbled with the cell phone. First I dialed 811. Then 911. The dispatcher answered and asked what my emergency was. I told him my full address and that someone was either trying to break into our house or was already in our house. I was practically hyperventilating as I told him, "My baby...I can't get to her...she's on the other side of the house...my husband's a cop....he's trying to clear the house....I can't get to my baby....my baby...."
Then the dispatcher asked me if I was calling from within the city limits of the major city about 10 miles away from us. UM, NO. I GAVE YOU MY FULL ADDRESS, INCLUDING TOWN, WHEN I CALLED!!!! "Then you need their police department, ma'am. Let me transfer you." AND HE PUT ME ON HOLD!!!

So by then I was definitely hyperventilating and shaking harder than I probably ever have and I had to relay the whole situation to the dispatcher in my actual town. And I could no longer hear Dave....I could occasionally hear a door or see flashing lights and I had no idea what was going on, I just needed to get to my Baby Bear so, so bad.

I think once I was on the phone with the proper dispatcher for all of three minutes before the police arrived at our house. But....oh my God, you want to talk about time creeping by. I slumped against our closet door. "Oh my God...please make them hurry...please, please, my baby, my little baby girl, please, I can't get to her, please, I have to get to her, please, please make them hurry, oh my God, I'm so scared...."

As it turned out, no one had gotten inside of our house. They had been in our backyard, they had come through our back gate. There were footprints in the mud leading up to the window where Dave had seen the flashlight shining in.

And that was that. The police couldn't find him. A man was arrested breaking into houses in a neighboring town with a similar M.O. a few days later. Maybe it was him. Maybe not.

Brooklyn never woke up once through the whole ordeal. Not even after the police left, when I collapsed next to her crib, crying.

And THAT is why I do not want to be home alone at night. I can't do this. What am I supposed to do if something like this happens again and my husband isn't home? I am absolutely terrified of not being able to protect my baby girl.

So. Do I take a sleeping bag into her room and sleep on her floor? My alarm will wake her up when I have to get up for work. Dave won't let me move her crib into our room. I have thought about putting her Tucker sling/wedge that she sleeps on onto our bed next to me so that she can sleep there, but Dave would have to move her and the whole apparatus when he gets home at 6 or 6:30 a.m., and I'm sure it would wake Brooklyn. I hate to shake up her sleep routine in any way whatsoever when she has just started sleeping so well the past few months, but I am just so afraid that I don't know what to do. The worry and fear are absolutely suffocating me this week. I am petrified of tonight. Ideas??????
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