Posts filed under 'Health'
October? That’s the last time we’ve posted anything here. Seriously? Isn’t that a bit too long? Our bad. Boy howdy is it going to be hard to catch up, since so much has happened. November happened. December happened. January is in full swing. But here goes!
November
November was hard. Anna took part in her second casting session at Children’s Hospital in Denver. Which meant lots of miles and lots of hours in the new car for Tara and the girl. Three times a week Anna met with physical therapists at the hospital for “play time”. And then of course there was the cast she wore for all her waking hours for 20 straight days. The good doctors at Children’s also decided to try some Botox in Anna’s left forearm, in the hopes that it would help her work on turning her hand over palm-side up.
During this time it’s hard to say any of us were especially happy, for reasons that are probably obvious. And the results of all her therapy, while positive (she is able to turn her hand over more, she’s doing more with both hands, she’s way more dexterous with her left hand when casted, etc.), were far less dramatic than we’d seen the first time we participated in the therapy program. Progress, it seems, is now being measured in feet rather than miles.
It was a struggle and a great relief to make it through to Thanksgiving. Finally the damn cast came off! And while the airplane trip out and back as just as interesting and challenging as you’d expect it to be with a 21-month old, we did have a wonderful vacation out in Kansas. Anna loves her family there, and still talks daily about some of the fun she had.
December
December’s always crazy. But we managed to get our (fake) tree up, some lights on the house, and the Christmas music playlist rolling early this year. Anna started to make the kinds of Christmas associations that will probably turn her into a crazed, present-hungry, darling little monster between ages 3 and 12. Santa is “Ho Ho”, the ornaments on the tree remained fascinating for weeks, and candy canes, she discovered, are just about delicious. Cookies seem more available and more easily accessible for someone her age during this time of year, and lots of her toys and books got an update.
My brother made it out for the holiday, and it was great to spend some time with him and my folks. Also fantastic to see our Denver relative a couple of times — for whatever reason we’re not seeing them enough these days.
I have no idea how Tara managed it, but we did end up getting a holiday card out the door to folks on a few days after Christmas. Go team!
January
Recovery mode. Trying to catch up on some alone time with just ourselves. Trying to get back into the swing of things at work.
Anna’s doing just great. She’s “talking” up a storm. Mostly a lot of babbling, but in our experience that stuff usually precedes breakthroughs. She’s improving her pronunciation and speaking individual words much more clearly now, and she’s started doing an occasional two-word sentence (e.g. “Momma sit”, “Daddy move”, etc.). Anna’s increasingly more interested in the whole potty-training thing (also a big focus at daycare), and she’s making some progress there too! The girl has also been fairly healthy of late (knock on wood), which we attribute in large part to a switch from cow’s milk to soy milk for most of her daily milk consumption.
Tara’s working an extra half day now, which is a Good Thing since it means she’s less stressed about finding time in the late evenings to complete her “half time plus” assignment. This means Ms. Rose is spending a bit more time in daycare, but honestly she’s loving it. They’ve moved her up to a new room (somewhat ahead of schedule, I’ll add), and she seems to be happy as a clam with the bigger kids and all the new activities and toys and games. Last Wednesday was a bit of a milestone: The girl seemed somewhat reluctant to leave daycare and the plastic milk carton she and her friends were playing with at the time.
We’re also now starting to seriously look ahead to the Alabama trip in February. Notice I said look “ahead”, not look “forward”. For those of you not up-to-speed: We’ll be moving to Birmingham for four full weeks, during which time Anna will participate in an intensive constraint therapy program. “Intensive” means three full weeks of 24/7 full-arm casting, with therapy 6 hours a day for 6 days a week.
Frankly, I think we’re both a bit terrified about all that entails. (Anna, bless her heart, has no idea yet what’s in store…). But the flights are booked and we’ve confirmed we have a place to stay. Some good news: Tara’s mom will be coming out in the third week to help out while I return for a few days to put in some face time at work (thanks Debbie!).
Whew. That’s all for now. I know we’ve got pictures to post, but hopefully we’ll try to be more regular about those kinds of things in the near future.
How have you been?
January 20th, 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
In the past week Anna has:
- had her eyes checked (everything looks good there)
- visited the new Children’s hospital
- met with the rehab doc who said she looked “just great”
- had her botox injections delayed until she’s seen next week by her OT down at Children’s
- had her hips x-rayed to determine if there is any problems with her hip development (everything looks good)
- tripped over a bronze bunny sculpture at Children’s and injured her left hand
- made a trip to urgent care on same day as trip to Children’s
- had hand/wrist/arm x-rayed 4 times to determine if anything was broken or torn (probably just a sprain)
- had her picture taken with Henry in their pumpkin costumes (not such a fun experience for anyone!)
- re-injured her hand
- played in the park a couple of times
- made another trip to urgent care to determine if she has another ear infection (unfortunately, she does)
- been re-weighed and measured: 27.2 lbs, and 35 inches long (big girl!)
- visited Oma, who returned home today after a 9-day stay in the hospital during which she had emergency abdominal surgery
That’s it, in a nutshell.
I’ve got new photos…I just need to post them. I can’t wait for Thanksgiving.
October 28th, 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
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
Today was the last day of Anna’s intensive therapy round. We drove down to Children’s today and met with her OT and the hand specialist who did Anna’s initial evaluation. Both were very pleased with Anna’s progress! When we started this on March 19th, Anna was not able to pick up anything with her left hand. Now she is able to pick up cheerios and puffs with her thumb and index finger! It is truly amazing what she has learned in such a short period of time.
Anna’s final day of wearing the cast was actually Saturday. Yesterday was a super-crazy day (Easter) so we ditched the cast and her OT wanted to see her without her cast today. As was expected, Anna reverted back to a lot of her old patterns when the cast was removed. She continues to play mostly with her right hand, but is using her left hand as a “helper hand” more and more. If food is placed on her tray, Anna will use her right hand to pick it up; however, if you present food to her left (i.e. hand it to her) – she will reach for it with her left every time. Remarkably, she still uses only her left hand to self feed with a spoon or fork. I guess we’ve never really given her right hand a chance to eat with a spoon or fork.
What’s next? Well, we aren’t rid of the cast yet. The OT recommended wearing the cast a minimum of 2 days per week for the full day. She also thought it would be a good idea to constrain Anna’s right hand/arm during one mealtime each day. So…we’ll be donning the cast on Fridays and Sundays and putting on the ski glove/sock for dinner each night. And much to Anna’s chagrin, we have already scheduled a 3-month follow-up evaluation and have signed up for another round of intensive therapy/casting to begin in October down at Children’s. The fun never ends! But we’ve seen how much progress Anna has made with this therapy and we are wiling to make the most of it!
We have some great pictures to download and post, but I left the camera in Anna’s room. She’s asleep now and we do not dare go in for fear of waking her. I’ll have post them later. Speaking of sleep…I think I’ll head that way myself. I figured it up yesterday, Anna and I made 14 trips either to Denver or Fort Collins in the last 3 weeks. That’s 45 minutes each way. Needless to say, we’re a little sick of driving.
Almost forgot to mention a couple of other milestones. Anna has almost cut all of her first year molars. The top left one is still not quite through yet. She now has 4 on bottom front, 3 plus the start of another on the top front and her first year molars. She’s missing her canines on top and bottom, though. Anna has also found a couple of new words: ball, dog and bye bye. Today at therapy she wouldn’t stop saying “ball” (there are a lot of big exercise balls in the therapy gym). For the past week or so, Anna has been standing on her own for a few seconds at a time. She’s getting braver and braver with each passing day. Walking here we come. Note to self…better get moving on that childproofing you’ve been putting off.
April 9th, 2007
We’re in the home stretch now! We have 6 more days of casting left in this round of intensive, constraint-induced therapy. It has been a tough couple of weeks for all of us, but I must say Anna is such a trooper! She’s done amazingly well with the cast and has shown a remarkable amount of patience for a one-year-old. She’s put up with a number of different people poking, prodding, and stretching her, not to mention tolerating a cast on her right arm, a new brace-thingy on her left hand/arm, and a whole bunch of kinesiotape on her shoulder and back. With all equipment and tape we’ve been jokingly calling Anna the bionic baby.
But it’s working!! All the hassle, discomfort and frustration for Miss Anna is paying off. Today I watched her eat grape (cut into quarters, of course) after grape after grape with her left hand with only minimal help from Neal and me. We were so very pleased. And Anna seems to realize that she is doing something great because she has such a look of pride on her face. It is truly a joy to watch! Anna has made so much progress during this period of casting that we are already signing up for another round at Children’s in about six months.
April 3rd, 2007
The Enssle-Hess household will be joining millions of people across the country who support the March of Dimes by participating in the WalkAmerica campaign. With baby backpack and stroller in tow, we’ll be navigating the streets of downtown Denver on a 10k walk! We need your help, though, so we’d ask you to visit our webpage and sponsor Team “Miss Anna” and our walk for healthy babies!
http://www.walkamerica.org/s_team_page.asp?SeId=395902&si=
If you’d like to join our team and walk with us, you can sign up from our webpage. The walk is on Saturday, April 28th in downtown Denver.
April 3rd, 2007
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