Posts filed under 'Photos'
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
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
Just a quick post to let folks know that we’ve posted some new pictures on Flickr. These include pictures from our trip to Kansas to visit family.
I’ll try to post an update on what we’ve been up to soon!
June 10th, 2007
Tara just posted a whole bunch of new photos, including some from Easter. Ms. Anna looks especially cute in her Easter dress. (Thanks Granny!)
Anna’s been doing really well lately. We’re seeing her use her left hand more and more each day, and the girl is really starting to think about walking. She can already stand by herself for as much as 10 seconds at a time! Her growing vocabulary includes such favorites as dog (“dahg”), cat (“at”), ball (“ba”), balloon (“ba”), up (“bap”), mom (“mama”) and dad (“ba”). (Context is key here, obviously).
Most importantly, she’s been generally healthy (knock on wood!) and happy. Or as happy as anyone cutting as many new teeth as she is can be.
Note: I’ve changed the way the photos on the sidebar work. First, there are more of them, and clicking on them should now take you directly to our Flickr site where you can view all our photos in different galleries and sizes. Whee!
April 16th, 2007
Today we journeyed down to Children’s Hospital to have Anna’s cast made. It was a tramatic experience for Anna (and for me! She looked at me as if to say, “Why are you letting them do this to me?”). For those of you who do not know, we are casting Anna’s right hand to encourage the use of her left. During the next three weeks we will be doing intensive therapy using her left hand. We’ll be attending therapy at Children’s three days a week and we’ll be continuing our normal therapy sessions here at home. Needless to say it will be a busy time for us.
This weekend will be an adjustment period during which Anna will hopefully become more accustomed to having the cast on. Seeing her with her dominant hand out of the picture today made me realize how far we’ve come, and yet how far we have to go in regards to the functioning of her left hand. It was something of a reality check for me. I think it caught me unawares. Her evaluation at Children’s added to that reality check; the doctors/therapists spelled out what Anna’s issues were in a rather clinical way. It all sounded so negative. As to be expected, they were evaluating her from this point in time, without regard to how far Anna has come in the last 4 months since we started her therapy. For some reason it was hard to hear.
As if getting your dominant hand casted were not enough, we had Anna’s 12-month check-up today (and no, I didn’t plan on having both of these events happen on the same day!). Everything about her development looks good. She still doesn’t weigh enough for us to be able to turn her car seat around (darn). In fact, the doctor was still a bit concerned about her weight gain. She’s fallen into the 25th percentile in her weight – 19 lbs. 12 oz. She holding strong to the 90-95th percentile for height, however (31 1/2 inches). Some of her meager weight gain may be due to the fact that she’s had a stomach/intestinal bug this last week. I won’t go into detail…suffice it to say, carseats are not meant to handle vomit. Anna also has developed another ear infection in her right ear. So we’re back on the antibiotics. Silver lining: no shots today because she has an infection.
I posted a ton of pictures from Anna’s birthday party and Granny and Papa Rex’s visit to Colorado. I’ll work on posting some short movies of Anna eating her cake and such.
March 16th, 2007
It seems like it has been awhile since I posted new pictures. We also have a few movies to show.
Anna has been doing some great things with her left hand! The first movie is of Anna crawling (almost 3MB). It was taken about 5 days ago and she has already improved immensely in her speed and synchronicity. The video is pretty grainy because of the poor lighting conditions.
The other two movies were captured this evening. Anna and I have been working on using her left hand to grasp things. She has difficulties rotating her arm and hand inward, which makes feeding herself with her left hand quite diffcult. Using a long cookie or a spoon, we’ve been working on maintaining her grasp and rotating her arm and hand to get the cookie or spoon to her mouth. She’s caught on and now wants to feed herself yogurt with her left hand (2.5MB). Notice I’m not constraining her right hand at all.
The last clip shows Anna banging on the table with her left hand (almost 2MB). This is the first time Anna has banged repeatedly (and rapidly) on anything using her left hand. Actually, it is the first time she’s done anything that rapidly with her left hand. Of course we’re not neurologists, but we feel this shows that her brain is working to send multiple, rapid signals to her left hand. The video is pretty grainy because of the poor lighting conditions.
Anna is such an amazing little girl. Neal and I often find ourselves on the verge of happy tears when we witness her doing new things with her left hand. She’s truly come so far! Now if only she’d grow some more hair… 
February 28th, 2007
A couple of new things to report regarding Ms. Anna. First of all, you may have noticed that Anna is wearing a splint on her left hand in some of her pictures. They call it a Joe Cool strap and it is designed to keep Ann’s thumb out of the palm. Anna generally tucks her thumb under her fingers when she makes a fist and it often stays there even when she opens her hand. This makes it incredibly difficult for her to grab anything. The splint prevents this from happening. She doesn’t seem to mind wearing it and it does what it is supposed to do. In our opinions (and that of her therapist), she is better able to grasp things with her left hand now that her thumb isn’t in the way.
We took Anna in for an RSV follow up and weigh in on Friday. Fortunately, her ears have cleared up and she looks to be in good health. The other good news is Anna’s weight gain. She gained over 1 lb. in a little less than a month! Anna has turned into a heavy-hitter when it comes to eating. I’m amazed at how much that little body can put away.
And lastly…a little rant on my part. I hate insurance companies. My employer is switching one of our insurance plans (the one Anna and I are on) to a vastly reduced plan with very very few doctors in our area. We’re now supposed to drive to Aurora (southeast Denver metro area) for Anna’s therapy and to visit a hospital. In its stead they are offering a crapppy plan with a high deductible. Grrr…. And we’re also having to jump through several hoops to get some of Anna’s therapy approved by our current insurance plan. Universal healthcare…I’ll vote for it in a heartbeat. You shouldn’t have to look at your finances to determine whether or not you can give your family the care they deserve/need.
I’m hoping to post a few pics soon…Anna had some spaghetti today. It was a mess, but she certainly had a good time.
February 11th, 2007
Josie and Henry came over to visit Anna and me today. Jo and I decided that both kinds were kind of stinky, so we thought it would be fun to give them a bath together. They had a BLAST! There are a few pictures I uploaded of the event. We also were able to shoot a short movie (a little over 4MB).
We also uploaded earlier this week a couple of pictures of Anna in her new felt cowgirl hat. She received it along with a whole bunch of new outfits from her great uncle Mike and Julie. Thanks so much!!
February 8th, 2007
The title pretty much sums up the time since our last post.
We spent Christmas in Kansas this year. This was Anna’s first Christmas, which was actually a lot of fun. She had no idea what she was doing, but she enjoyed ripping paper off. Not so that she could see what was under the paper, but so that she could eat the paper. We had to keep a pretty close eye on her with all that paper laying around. We had a great time visiting with all the grandparents, aunts/uncles and cousins!
Due to the snow storm in Colorado and Kansas over the weekend of the New Years holiday, we stayed in Kansas a couple of days longer than anticipated. We had a room booked at the Burlington High School gymnasium, but thankfully we didn’t need to use it! We returned to Longmont on Monday night to find that our driveway was completely shoveled! Thank you Andy and Barbara (our next door neighbors). However, the plows finally came though on our street and deposited a large mound of icy snow in front of our driveway. After an 11 hour drive we had to dig ourselves out of the mound so that we could pull the car into the driveway. Not something you want to do at 11pm. Especially considering we all had to return to work the very next day!
Anna made it to daycare on Tuesday and Wednesday that week and by the weekend she was sick AGAIN! On Saturday she had a very high fever and on Sunday she had labored breathing. We interrupted our Christmas with Neal’s parents and cousin Sandra to take Anna to the urgent care clinic on the advice of our on-call doctor. The on-call doc said that we should begin to be concerned when her respirations per minute reached 40-50; Anna’s were 80 when we left the house and 96 when we reached urgent care! While there they had her do a breathing treatment, which is a lot of fun with an infant (NOT). They also tested her for RSV and influenza. Unfortunately she tested positive for RSV. If you haven’t had a child recently, you may not know that RSV is a potentially very dangerous respiratory virus for babies. It manifests itself as a cold for adults and older children, but it wreaks havoc on the ability of infants to get enough oxygen. It is also highly contagious, so no daycare for at least a week.
Anna was KO’d for that entire week. She didn’t begin to feel better until the following Friday. Even then she was still not her usual jovial self! The fever continued throughout the week. She developed two ear infections. And breathing remained an issue. Every night for a week we gave her a breathing treatment using a home nebulizer (again, a lot of fun). And then the cough started. It was just a terribly horrible week. Anna slept with me because the doctors wanted us to monitor her breathing; Neal slept on the couch. In sum, no one slept very well. On Monday we went back to the doctor to see if she would be cleared for daycare starting this last Tuesday. Unfortunately, she was still wheezing and rattling so we were told to wait for a couple of days. To top off that fabulous time, Anna gave me her virus. So now I’m coughing all night!
Last but not least, Anna is cutting more teeth! She now has 3 on the bottom, her two front teeth on top are coming in nicely, and she’s started to cut one of her first year molars. Needless to say, she is a drooling queen and has been quite fussy lately. It’s hard to tell whether she is fussy because of her sickness or because of the teeth. Maybe it’s a combination of both.
I posted some new pictures as well. I want to upload some new movies, but I need to use Neal’s desktop to do that. I’ll try to do that sometime this weekend. We have a couple of really good ones.
Oh, and on the therapy front, Anna is cruising around on the furniture now. We still aren’t hands-and-knees crawling, but we are continuing to work on that. I’m of the opinion now that she will walk before she crawls (on her hands and knees). She’s also doing a great job pulling to stand on her own. Now, if we could just get her to sit up from commando crawling, we’d be in business. Her OT today was absolutely amazed with Anna’s use of her left arm. She had expected a bit of a regression given the fact that Anna was out of commission for more than a week, but she was pleasantly suprised to find that Anna had actually gained skills. Baby girl truly is amazing. We’ve got some interesting therapy news on the horizon. I won’t elaborate now because it is still in the works, but I’ll be sure to share when we know more.
January 18th, 2007
I’m sure everyone has heard the news reports of the blizzard that hit the Denver metro area starting yesterady. I’ve included some photos of the aftermath of that storm. It snowed pretty consistently from Wednesday morning until Thursday noon. The streets are still pretty much a mess in our neighborhood. The plow probably won’t hit us because we live on a cul de sac. I started shoveling on Wednesday during the storm. I probably shoveled almost a foot of snow at that time. By the time I was finished with the drive, the front steps were completely covered, as was the part of the drive I shoveled first. And boy, am I thankful I shoveled some on Wednesday because we had another foot plus some to shovel today. And thats not including the areas with snow drifts. We are extremely thankful to our neighbor, Andy, who helped me shovel today. Neal’s not allowed to do any physical activity for three weeks after his eye surgery. We don’t want him to go blind! So it was all me on shovel-duty. I imagine I’m going to be pretty sore tomorrow. I think I’ll take some ibuprofen tonight.
December 21st, 2006
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