Posts filed under 'Babies'
Not us! Last night was a very long night for Anna and me. Anna seems to have picked up some bug (or already had a bug) that took advantage of the fact that she had no sleep yesterday. She had a fever last night of 102 degrees. That, coupled with the fact that she’s in strange place in a pack-n-play, didn’t make for a particularly good night last night. I ended up sleeping with her in her room. There’s a queen-sized bed in her room, but I certainly wouldn’t know, as I was clinging to the very edge while Anna took the rest. She just wanted to be close, and kept insisting on sleeping on me. I generally like to sleep in a cool room, with a cool pillow, etc. The heat generated from Anna’s hot little body was not really conducive to good sleep for Tara.
So far today, Anna’s been a bit of a mess. She’s obviously exhausted, but not really wanting to take a nap. We finally insisted on the nap, and she’s going on 3 hours! She even managed to sleep through a pretty loud thunderstorm (I felt like I was in Kansas again! You just don’t get storms like that in Colorado.). Hopefully she can sleep off the worst of this bug. If not, we’ve been googling the nearest urgent care.
When she finally wakes up, we’re off to Target to spend some big bucks. You really take for granted the fact that you have condiments, spices, and what-not in your pantry. We don’t even have any dishwashing detergent to wash up the pots we’ve used.
February 17th, 2008
I posted some pictures we had taken recently of Anna and Henry in their Halloween costumes. I’ve got some other photos to post, but I have to get them off of the camera first. Too few hours in the day.
We had Anna’s neurology appointment on Monday, as well as her preliminary evaluation for this second round of constraint therapy. The neurologist thought Anna looked great, and commented on the fact that if you didn’t know Anna had hemiparesis, you couldn’t really tell. Whereas this is GREAT news, it is going to turn into the bane of our existence vis a vis receiving medical services. Anna still has quite a ways to go in terms of her therapy, but we are reaching a point where the medical community says “oh, she’s functional, so we aren’t going to treat her anymore.” It hasn’t happened yet, but I’m seeing that as an issue coming up.
The OT at Children’s who will be working with us during this next round of constraint therapy believes the botox injections could really help Anna gain more functioning in her left arm/hand, so we will be proceeding with the treatment. This is not really a cut-and-dry decision for us. Because Anna’s tightness is more in the deep tissue of her shoulder and smaller muscles in her forearm, the botox injections will be a bit tricky. There is no way that the doctor is able to help the tightness in the deep muscle tissue, but she can do an injection in her forearm. These smaller muscles are harder to isolate and if she is not precise in her injection, she could end up causing decreased functioning in her fingers (for grasping). Of course, if this happens the constraint therapy is really going to be difficult to continue. I’m of the opinion that if her fingers are affected by the botox, we will call off this round of constraint therapy completely. The OT believes there are still gains that can be made, even if her grasping is affected…but at what cost!? A completely frustrated little girl? I don’t think so.
Neal is rightfully concerned that if the botox does affect her grasp that we may lose ground during the time that the medicine is blocking the signals to the brain (botox’s effects usually lasts about 3-4 months). She is beginning to use her left so much in her daily life (unprompted, no less), it would be a shame to see her disregard it once again. Needless to say, we are quite nervous about the procedure. Not only are we injecting a dangerous neurotoxin into our baby-girl’s arm, we are also exposing her to the risk of decreased functioning of her left hand. To minimize the risk of an unintended muscle being injected, the doctor will use an electronic stimulator on her needle, which will show her which muscle she is in contact with. I’m not sure how this will work, but I’m sure we will learn soon enough. Anyway, it is not an easy decision. These are the times you can’t help but think about how unfair life can be.
October 30th, 2007
Anna had her 18-month check-up last week on Friday. She now weighs 26.2 lbs (this after a day of throwing up! Thursday was not fun) and is about 33 or so inches tall. Everything seems to be on track!
I’ve been busy making Halloween costumes for Henry and Anna. We’re planning on taking them for pictures with their costumes – hopefully they will cooperate and wear them during the photo shoot.
We had dinner last night with Taara, Erik and Ian! We hadn’t seen them in about 6 months, and were amazed at how much the babies had grown. We had a great time and hope we can get together again soon.
Anna’s new orthotic is causing some bruising on her leg – so we have an appointment with the orthotist so he can modify the brace.
That’s all for now. It’s raining here…has been all day long. Very dreary and cold. Makes me want to stay in bed with the covers pulled up to my chin.
September 24th, 2007
We’re taking bets on how long it will take the monkey in our family to figure out that she can push the chair to the kitchen counter, climb onto said chair, and access all the forbidden wonders located on the counter top. This evening we walked into the kitchen to find Anna standing on one of the kitchen chairs. When she learned this new skill, I haven’t the slightest idea. She certainly was pleased with herself! So…who’s going to make the first bet?
In other news…we went to the circus today. The Greatest Show on Earth is certainly lacking. Perhaps it is just because I’m older and jaded, but it seemed smaller and amateurish (Neal agreed). I mean, they had two clowns…yes, that’s T-W-O clowns; and some troupe from Bulgaria jumping through hoops and such. No tigers (thanks Roy), only one elephant, one horse, and some dogs catching frisbees. We arrived a bit late to the arena and tried to find our seats in near complete darkness. In the meantime, Anna was totally freaking out. The darkness, the spotlights, the people…all of it caused her to cry and scream at the top of her lungs. We honestly thought that we were going to be forced to bag the entire thing. After a bit, the house lights came up and we were able to calm her down. By the end of the performance, Anna was crying because we had to leave.
On Friday Anna received her new orthotic. I hate it. She doesn’t seem to mind it though, and I guess that’s all that matters. It extends up her leg to about the largest part of her calf. It has two hinges that allow her to bend her knee and ankle, but prevent her from pointing her toe. She’s definitely heel-toeing, but she sort of looks like a pirate with a peg leg. She swings her left leg out and around. I’m hoping her PT can tell me whether this will change once she becomes used to the weight and the way it works. We’re certainly going to need to go shoe shopping again. So far we have one pair of shoes that fit over this new brace. I’ve heard that Nordstrom’s allows you to split shoe sizes for situations like this. I think she’ll need a size larger for her left foot (and perhaps larger width, too). The shoes at Nordstrom’s may cost you more, but it is probably still less than what you would have to pay if you were forced to buy two pairs each time.
Yesterday Neal sent me to a day spa for my birthday present. What a great gift! I had a massage and facial, and I got my hair cut! I realized that this may be the first (no, maybe second) haircut I’ve had since Anna was born. Anyway, the stylist asked me if I wanted to keep it long and if I pulled my hair back. I answered not necessarily to both questions, and she took it from there. I must say I was pretty freaked out (still am a little) by my new “do”. It’s much shorter than I’m used to, and it’s layered. I don’t think I’ve ever had layered hair – feathered, yes; layered, no (oh come on…I lived through the 80s). Needless to say, I think I’m going to need a little time to adjust to this new haircut. It’s supposed to be “wash and go” because I told her I don’t have the time or patience to deal with fixing my hair. This morning I had to do a lot more than wash and go. Why does your hair NEVER look the same on the second day? Arg.
Max has a new friend (or nemesis, we’re not sure which) that comes to visit him almost everyday. This very curious, orange tabby cat has been making the rounds nightly. This rocks Max’s world. They loudly mew back and forth to each other for what seems like hours (this usually happens after everyone has gone to bed). I’ve resorted to spraying the orange tabby with water (through the window screen) to make him leave so that the house is quiet again. Max then runs from window to window looking for his contact with the outside world. Poor guy.
September 16th, 2007
Since my last entry I’ve posted at least a couple batches of photos. Make sure you check them out! They extend far beyond those found on the front page of this site.
Just a quick update…yes, we are all still alive and kicking! I know it has been a long time since I updated the blog; I guess we’ve been a little busy. Here’s a brief list of what’s been going on: Anna’s been walking around a lot lately – it’s become her primary mode of locomotion at this point; she’s had another ear infection; she’s been fitted for a new Dynamic Ankle Foot Orthotic (DAFO) for her left foot, so that she will hopefully walk correctly (heel-toe, not toe-heel); I was sick for a couple of weeks; Neal was sick for a couple of weeks; Granny and Papa came to visit; Anna played a lot with Henry; she’s been increasing her vocabulary substantially; Neal received a promotion; and we recently purchased a new car. Doesn’t sound like a lot when you write it down, but it seems like we’ve been very busy lately.
September, October and November are gearing up to be extremely hectic months. If she isn’t already, Anna will be fed up with doctors and clinics (I’m sure I will be too, and I’m not the one being poked, pulled and stretched). We have Anna’s 18 month check-up coming soon (she’ll be 18 months in a little more than a week!). And then we have all of her specialist appointments – neurologist, opthamalogist, neuropsychologist, and physiatrist (rehab doctor). We’re coming up on the one-year anniversary of Anna’s diagnosis. It’s hard to believe that it has been only a year. Sometime in October we’ll also be having Anna’s 6-month reevaluation for her IFSP (Individualized Family Service Plan). This is basically a powwow among Anna’s therapists, our early intervention service coordinator, and us where we discuss Anna’s progress and our goals for the next 6-month period.
In late October Anna will be receiving her Botox treatment. No, she doesn’t have wrinkles. Doctors often use Botox in children with cerebral palsy to relieve/reduce spasticity (high muscle tone) in select muscle groups. The physiatrist will be injecting Botox into several of Anna’s arm muscles. This will hopefully allow her to strengthen the opposing muscles that aren’t able to do much because of those muscles with high tone. Of course, this makes Neal and me more than a little nervous. I mean, the stuff is poison. And she’s still so little. They say that the injections are painful, which makes me feel terrible for putting her through this. I guess the one saving grace is that she probably won’t remember this (?). I certainly hope she doesn’t.
After the Botox treatment, Anna will begin her second round of constraint therapy at Children’s in Denver. As a reminder, this is a 3-week intensive therapy program where Anna’s good arm is casted in an attempt to make her use her affected arm. We see an occupational therapist down at Children’s 3 times per week, and we do a lot of work at home. She wears the cast from the moment she wakes up until she goes to sleep. Fun!
Anna has made a lot of progress since her last round of constraint therapy in March/April. Since we finished up the first round in April, we’ve continued to wear the cast all-day for 2 days per week and during each and every evening meal. It will be interesting to see what goals we establish for this phase. The treatment period will last right up to the Wednesday before Thanksgiving. I’ve been joking about the fact that this year we will have something for which to be truly thankful: a few cast-free days!
September 7th, 2007
Super-quick update on Anna’s progress…she’s walking! She doesn’t do it ALL the time and she’s still pretty cautious, but she’s most certainly getting around more and more on two feet. Of course, we are excited beyond belief. Her physical therapist says that in a couple of weeks she expects Anna to be walking pretty much all the time. I guess that’s our cue to finish all the child proofing.
In other news, Anna had her 15-month check-up on the 15th of June. She weighs 23 lbs and is 32 1/2 inches tall (50th and 97th percentiles, respectively). Everything seems to be going well developmentally, and I hope I’m not jinxing this by saying that her ears look good! Let’s hope we don’t have to battle any summer ear infections.
Anna is finally acquiring some words! No longer is everything “bah” – she now says “Dada” and “Mama”, “Bir” (bird), “Dat” (cat), “Ba” (bath), “Buh” (book), “tic” (tickle), “go”, etc. As you can see, we don’t really have any final consonants, but I think those will come with time. She’s also picked up a ton of signs – dad, mom, rabbit, bird, dog, book, drink, shhh, sleep, please, more, food, cat, cow, gorilla, telephone, etc. I’ve learned quite a few signs myself in the past couple months! When I’ll ever need the sign for elephant, I’ll never know.
That’s about it for now…I hope to capture a “walking” video in the near future. I’ll be sure to post it if I can catch her in the act.
June 25th, 2007
Okay…so what is the deal! Why can’t Miss Anna catch a break? We found out this morning that Anna has croup. What a scary thing it is! Last night I was downstairs doing some work on the computer and I heard this weird noise. I honestly thought it was coming from outside – perhaps our neighbor’s dogs. Nope, it was coming from upstairs. It was Anna. Her cough sounded like a bark.
I think she slept okay last night, though. She woke up early this morning because of her cough. She also sounded like she was having trouble breathing. So we made an appointment to see the doctor. It’s funny, Anna seemed almost fine when we went to the doctor’s office at 10am. Just a short 2 hours after we had called to make the appointment. I guess that’s the nature of croup, though. Nights and early mornings are the worst and the symptoms become much less severe (to non-existent) during the day. Unfortunately, croup is contagious – no daycare for this week. Neal and I will be working half-days for the next couple of days.
Hopefully, Anna will have an okay night tonight. The doctor gave us a single-dose steroid treatment to reduce the inflammation, so that may help with the coughing. I’m not taking any chances…I’m heading to bed now in anticipation of being up for some portion of the night.
By the way, Anna weighs 22 1/2 lbs. And so far she doesn’t have an ear infection. Let’s hope it stays that way.
May 7th, 2007
So Anna has been standing a lot lately. She just lets go of whatever she’s leaning against and just stands there. Well, on Thursday during her OT session Anna walked! She took 4 steps all by herself. Anna’s OT held out a toy for her to come get and Anna let go of the couch and walked to her! The OT kept moving a little further back and a little further back and Anna just kept coming! I was stunned. She hasn’t repeated her 4 step performance, but we have witnessed 2 and 3 step attempts.
Walking here we come.
May 5th, 2007
Busy busy busy. That describes these last couple of weeks since our mid-April post. Both Neal and I have been crazy-busy at work lately; simply not enough hours in the day. I have to wonder where the last 2 weeks have gone, though.
Update on Anna…shortly after Neal’s last post on the 16th of April, Anna either developed another ear infection or had a flare-up of the same one she’s had since…oh, I don’t know, the first part of March! She had an ear infection when she went in for her 12-month check-up. She was given a 10-day course of antibiotics, which didn’t clear it up. We went back to the doctor and were given a different family of antibiotics – 6-day course. And we most recently went in and received yet another family of antibiotics – 10-day course. We’ve been off the antibiotics for 4 days now…so far, so good. We have an appointment next Friday to see if this round of antibiotics actually killed it. I hope so. If not, there is talk of ear tubes. Let’s hope that we do not have to go that route.
Otherwise, Anna is doing well! She is gaining weight and growing tall. At one of her last doctor’s appointments she weighed in at 21 lbs 7 oz. She gained 1 lb 4 oz in about 2 1/2 weeks. We’re less concerned with her weight these days. We’ve discovered that the things on the edges of table tops are now fair-game. Anna can now peek over the edge of a table and check out what’s on top. Yikes.
We’re still actively cutting teeth. I know I’m tired of all the drool and fussiness – I can only imagine how tired Anna is of the entire business. We’ve pretty much got all the first year molars now and the 4th front tooth on top is pretty much in. I think we’re starting on some of the canines, although I can’t see anything yet. She’s chewing on EVERYTHING again. She won’t let me put my finger in her mouth anymore to check on tooth status and with the number of teeth she has, if she doesn’t want my finger in there, she’ll let me know by biting it! Those baby teeth are wicked sharp.
We have some news to report on the therapy front. During the second week in April we had the 6-month review of Anna’s IFSP (Individualized Family Service Plan) through Imagine! Anna’s OT, PT and our service coordinator met at our home to discuss Anna’s progress to date and develop some goals for the next 6-month period. Anna met all the goals we set back in October, and by pretty much any measure she has made excellent progress. Our new goals consist of learning how to walk, clapping hands, and developing a refined pincer grasp. It was also determined that Anna would benefit from weekly PT visits rather than the bi-weekly we had during the previous 6-month period. So we now have PT on Mondays and OT on Thursdays every week.
Yesterday Anna was fitted with a pair of orthotics made by a company called Cascade. They are designed to help Anna regain the arch of her left foot and keep her feet in alignment, which should help her to walk and prevent her from developing some bad walking habits. They are made of a semi-flexible plastic and come up just over her ankle bone. We went shoe shopping yesterday to find a pair of shoes that would fit over the orthotics; that was a challenge. We found a pair of teva-esque sandals and a pair of Converse canvas hi-tops. When she wears the hi-tops, you can’t even tell she’s wearing them (she just looks like she has amazingly fat feet). Right now we are only wearing them for 45 minutes a day. We’ll do that for 3 or 4 days and then gradually increase the amount of time she’s wearing them until we reach 4 hours a day. Once she starts walking she’ll probably wear them for longer.
Anna’s OT is going well. She’s using her left hand to help with more and more bi-manual tasks. We’ve been working on using two hands to pick up a ball and a large cereal box. We’re still wearing the cast on Fridays and Sundays all day and the sock during dinner. I must admit it is getting harder and harder to stick with the regimen. She’s started fighting the cast and I find it difficult to be the “bad guy.” How do you tell a 13 1/2 month old that this is for her own good?
Hope to have some pictures to post soon. I need to download them from my camera.
May 1st, 2007
This last weekend was the March of Dimes WalkAmerica. Team “Miss Anna” drove down to Denver and walked 6 miles around downtown. It was a beautiful day – plenty of sun. Neal, Anna and I were joined by our friend, Wil. Unfortunately, Henry and Uncle Gus weren’t able to join us due to a family emergency. Anna managed to sleep in the stroller during a large part of the walk, but enjoyed the final 45 minutes or so riding in the backpack. When I figure out how to get pictures off my cell phone I will post a few we took during the walk.
Some very special thanks are in order here. Thanks so very much to those of you who supported our team. We were able to raise nearly $2500 for the March of Dimes thanks to your generous donations. Every penny counts! And thanks to our Team “Miss Anna” members: Henry, Gus and Wil. Each member raised money on their own, which contributed to our team total.
Thanks again for your support of the March of Dimes!
May 1st, 2007
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