Monday, January 25, 2010

Add another doctor to the list

Let's just add another diagnosis and doctor to the list, shall we? I shouldn't complain. We are so fortunate and have 3 happy and healthy kids. But doggone it. I just got a call from Nicholas's pediatrician. He had his (very late) 6 year physical last week. Her only concern during that visit was that it looked a bit like his spine curved, but she couldn't be certain because he was a bit wiggly during the exam. So just as a precaution, she sent him to get an x-ray. Sure enough. She called this morning to confirm that Nicholas does in fact have scoliosis. It's very mild, but still, as a precaution, we now have to go see a pediatric orthopedic surgeon at St. Vincent. Most likely they'll just order regular x-rays to make sure it doesn't get worse.

I thought this week was going to calm down a bit. For the last two weeks, on top of getting ready for Blake's birthday party, we've had Lexi's 9 month exam, Nick's 6 year exam, both boys got H1N1 vaccines, Lexi's appointment with the geneticist and therapy evals at the genetics center, her regular OT and PT appointments, my dentist appointment, and Lexi's audiology screen (which, thankfully, she passed). Today Alexis had her 6 month First Steps review and her PT appointment. I thought we were done for a while, but now we'll add Nick's scoliosis consult to the calendar. And Lexi's OT and PT are going to be increased to once a week for each discipline. I was going to start talking to the boys about enrolling in t-ball or soccer but I can barely keep track of all these doctor appointments. I've always considered myself a pretty organized person, but I'm feeling a bit frazzled lately. Maybe I need a nap. I definitely need a bigger calendar. No, what I need is to stop complaining about my calandar and focus on my children.

We've also had our first glitch with the insurance company. Again, I shouldn't complain because as insurance frustrations go, this really is nothing, but it's still a frustration. Alexis is supposed to have a monthly RSV shot and she was due for it at the beginning of January. Unfortunately, something with our insurance changed on January 1, so I got a call from the doctor's office saying there was some confusion. I had to start by calling the specialty pharmacy, who referred me to an insurance lady, who said that I needed to call Alexis's case manager. It goes on from there and I won't bore you with the details, but it's now 3 weeks later and she still hasn't gotten this shot that she needs. Between needing a referral for Nicholas and this insurance thing with Alexis, I've been on the phone with someone at the pediatrician's office 5 times today and again I'm waiting on a return call from either the nurse at the pediatrician's office or from the new specialty pharmacy.

Okay. Enough of that. I'm done venting and going to go count my blessings now. 1, 2, 3........678, 679, 680.......1347, 1348, 1349......

Sunday, January 24, 2010

Beezle is 5!

It's been a fun weekend. Blake turned 5 today and we celebrated his birthday with family and friends yesterday. And big surprise, the party had a pirate theme. Pirate cake, pirate presents, pirate hats and he's wearing his new pirate backpack:

The boys were thrilled to have so many cousins and friends come, and of course Alexis was totally entertained by all the people and loved having so many people to hold her and pay attention to her.

Lexi and Daddy

Lexi and Uncle Brent

Lexi and Marley

Lexi and Nicholas

So today was spent enjoying Blake's new gifts. We watched Alvin and the Chipmunks, colored, played with pirate magnets, read pirate books, and played with pirate playmobile toys. Poor Blake was so tired today, he actually fell asleep in the computer chair.

Tuesday, January 12, 2010

Sweet 16

Alexis's doctors are so pleased with her growth and development! Yesterday Alexis had her 9 month check-up with the pediatrician. She weighed in at 16 lbs, 8 oz. She hit 16!! What is it about that number that makes her seem suddenly MUCH older and MUCH bigger? 16! Let's buy that girl a car! Imagine how old and big she'll seem at 17 lbs? Se-ven-teen.

Anyway, she was 16-8 in weight and 26" in length. Dr. Miller was thrilled that those numbers put her in the 10th percentile. And that's not on the Down syndrome growth chart--that's on the regular chart. Often, people with Down syndrome have shorter limbs. Alexis might, but she could also take on the physical characteristics of her parents. In case you haven't met us, there are absolutely no short arms or legs in our household. Alexis may not be as tall as me, but I don't think she'll end up short.

Alexis absolutely loves baby food. She eats 2 meals a day, but I think we're going to have to increase that because she is suddenly showing less interest in the bottles. Dr. Miller wants her to stay on the 24 calorie formula since she is growing so well with this. We also get to try her off of her Prevacid to see how she does. If she starts showing any discomfort from reflux, we'll start it up again.

Dr. Miller was pleased to hear about Lexi's progress in therapy. Alexis put on a great show for the doctor, smiling, rolling over, making faces. She's a ham and her personality just shines. I'm a proud mama! Just yesterday, Alexis discovered her feet and showed them off to the doctor as well. Alexis did yell at the nurse once--when she got her H1N1 shot. We're still waiting for her monthly RSV shot to come in, so little princess pincushion will probably be back at the doctor next week to yell at the nurse again.

Today Alexis had her second appointment with Dr. Escobar at the Genetics Center. Before seeing the doctor, Alexis was evaluated by PT/OT to see how she was doing with cognition, gross motor, and fine motor skills. Keep in mind that a typical 9 months old who had been in the NICU for over 2 months would be expected to function at a 7 month old level. For some kids it can take up to 2 years for them to "catch up". (As for me, I may use this excuse for the rest of her life. When she's 16 and isn't allowed to leave my sight, I can say, "Well, she's actually more like 15 years and 10 months".) Anyway, I was very pleased to hear that her cognition and gross motor skills were at a 6 month level. Great! And her fine motor skills were at 8 months! 8 months! And she's supposed to be at the 7 month level. Can you say ADVANCED?????!!!!!

Dr. Escobar (love, love, love him!) came to talk to us and take a look and listen to Lexi. He is such a kind man, and while I'm sure he says these things to all the moms, he just raved about Alexis, explained some things to me, and Alexis just beamed at him! I love when she puts on a good show. Alexis also spent most of the appointment trying to show off her new trick: flipping from her back to her stomach. She tried to flip off the therapy mat, off the exam table, and off the scale. Alexis will need to have her hearing evaluated (routine check) and then he wants us back in 3 months. We actually have an appointment in the Down syndrome Clinic (same location, same doctor) but I think that it's the one day in the month that all the specialties are there. It's a long 3 hour appointment.

As Dr. Escobar was leaving the room, he was still raving about how beautiful Alexis is and how well she's doing. And then he stopped at the door and turned to me and (even though I'm sure he says this type of thing to all the moms again) asked me in a very kind and genuine way, "Are you happy?" I don't know that anyone has ever asked me that before. It caught me off guard and even choked me up just a bit. But I could honestly respond to him without any hesitation, that yes, I am truly happy.

Thursday, January 7, 2010

9 months old!

Alexis is 9 months old today. She's doing so well and getting so big! On Christmas Eve she finally learned to roll from her back to her front. She is over 14 lbs (she will get weighed again Monday at the doctor) and eating 2 meals of baby food a day (plus multiple bottles of course). She has to be the happiest baby on the planet! She will fuss at times and holler out when she wants our attention, but hardly ever cries. Really. She cries when she's tired of doing therapy and other than that, maybe every couple of days. I took her for her second flu shot the other day. Not a tear. (She does usually cry at shots though--she's normal.) She takes 3 naps a day and we lay her down awake and she puts herself to sleep, and almost always without crying. I think God decided she's been through enough and decided to give her (and us) a break. I tell you, that God up there has been good to us.

Alexis will go for her 9 month check up on Monday and has her second appointment at the Down Syndrome clinic at St. Vincent on Tuesday. At the end of the month she has her 6 month review with First Steps. She continues to receive OT and PT twice a month. She is getting closer to sitting up on her own. She does great when we prop her up in the corner of the couch, but needs to get a bit stronger for sitting up on the floor.

As for the boys, we are getting back into our school routine (no school tomorrow though due to the snow). It's so fun watching Nicholas amaze even himself when he'll realize he can read a whole sentence or even a whole page when we're reading at home. And he'll be happy to take on anyone on the new Wii. Blake is counting the days until he turns 5 and can have his pirate birthday party. But Blake says he's no longer Captain Blake. Now you can call him Captain's Curse (which is actually the name of a Monster Truck.) I am a very blessed Mommy. Life is good.

Going to the bus stop this morning: