Posts filed under 'Health'
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
We completed our first week of casting therapy!! We’ve had 2 formal therapy sessions down at Children’s and two more sessions here at the house. Needless to say, we’re glad it is the weekend! Two more weeks and 9 or 10 more sessions to go.
Anna has tolerated the cast quite well. We leave it on all day and remove it right after dinner in the evening. She doesn’t have to wear it at night - thank God. She generally fusses and gives me dirty looks during the first 30 minutes to 1 hour after I put the cast on, but then she’s back to her happy self. Most of the therapy we do revolves around eating. That means we get 4 opportunities for very focused therapy each day (meals plus snack time). It is hard to keep a 1-year-old “on task” when doing play therapy. We do an activity for about 5 minutes and she’s ready to move onto something else. Eating, on the other hand, takes advantage of her motivation. We can spend 45 minutes to an hour doing the same thing over and over and over again, and she doesn’t really tire of it until she’s full!
I know it has only been a week, but we’re already noticing progress! When we started this therapy Anna was able to spoon-feed herself (sort of) using her left hand (see movie from a few weeks ago). She could also hold a biter biscuit (long cookie, for those of you who are unfamiliar with what a biter biscuit is) in her left hand, but often forgot it was there after a few nibbles and it ended up falling out of her hand. She was unable to pick up food items off her tray - no matter the size. That was so last week.
I’m pleased to report that Anna is spoon-feeding herself with her left; holding the biter biscuit in her left hand, dipping it in yogurt, putting it in her mouth, and repeating the process over and over; and picking up puffs (think cheerios) with her thumb and index finger and actually getting them to her mouth on her own (hit or miss on the getting them to her mouth, but progress nonetheless). All I can say is “WOW!”
Anna’s regular OT was extremely impressed with her progress. She was stunned at how much was accomplished in just one week’s time. And I think Anna’s OT down at Children’s was a little taken aback at how quickly Anna had picked up these skills (obviously she doesn’t know Anna, huh?). Of course, there is still a long way to go, but we are so encouraged by these small steps! We’ll be sure to keep you posted on her progress during the next 2 weeks. I hope we’ll have even more to report.
March 23rd, 2007
Anna had her first full-day of casting today, and we’re pleased to say that it went well. She was really pretty bent for the first 30 minutes or so after we put it on this morning, but seemed to adjust well thereafter. Anna was just getting to the stage where she didn’t need constant attention while playing or eating; with the cast it feels like we’ve been transported back several months. She pretty much always needs someone there to help her grasp toys or read books. And mealtimes are a true challenge! She’s independent enough that she wants to feed herself all the time now, but she becomes incredibly frustrated when she isn’t able to do it with her left hand. With a little help from Mom and Dad, she’s able to have some success, however. I’m anxious for her “formal” therapy to begin on Monday. I would like to know what types of activities will have the most impact. I feel a bit like I’m flying blind.
I uploaded a couple of pictures I took today. Anna was eating a biter biscuit with her left hand. I included one that shows what her cast looks like, for those who are interested. It was beautiful weather here in Colorado, and Anna and Dad spent some time outside today (thus the hat).
March 17th, 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
Anna’s Granny and Papa from Kansas are visiting us! Anna’s 1st Birthday party is this weekend and they made the drive out to Colorado to help us celebrate. I can’t believe that the little Miss will be one year old! We’ve said it before, but Neal and I agree that it has been both the longest and shortest year ever. So much has happened since this time last year, yet it seems like only yesterday that she entered this world.
Next Wednesday Anna and I will be making a trip down to Children’s Hospital in Denver to see if she is a good candidate for a special type of therapy. We’re meeting with a rehab doctor and a hand specialist. The therapy regimen is called Constraint-Induced Therapy and involves the casting of her unaffected arm for a period of 2-3 weeks. While her right arm is casted, we’ll be doing intensive therapy with her left hand/arm. This type of therapy has shown great promise in children with some form of hemiparesis, and there are several studies that document this success in the literature. We’ve tried some home-grown constraint therapy using a couple of very thick socks or a ski mitten placed over her right hand/arm; it is amazing what she can and will do with her left hand if her right hand is out of the picture. We’re hoping that this therapy will help Anna realize that her left hand can do things, too!
If Anna is deemed to be a good candidate for this therapy, we’ll probably start on the 19th. This is potentially going to be a tough time for Anna (and for us, too). I’m hoping she tolerates the cast and is still able to do many of the things she does now. I’ll keep you posted on our progress!
March 6th, 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
On Thursday Anna had her 9-month check-up. She’s 29 inches long (still in the 95 percentile) and 18 1/2 lbs. The doctor is a bit concerned about her weight. Up until this appointment Anna was following a perfect growth curve. She’s fallen off her curve pretty significantly and the doctor wants to keep an eye on her to make sure her weight corrects itself. She’s been sick off and on for some time now, so this may be the reason for her smallish increase in weight. It could also be that she is using more calories due to all her exercise and increased mobility. The doctor wants her to come back in about a month for a weigh-in. For the time being we’ll see if we can’t increase her caloric intake.
Other than her weight Anna is developing on track in all ways (except, of course, those areas that involve the use of the left side of her body). She’s babbling like a brook lately and has started to wave. We also suspect that we are seeing Anna’s first sign - food! She doesn’t make the sign too consistently yet, but we definitely feel she is making it deliberately. It is quite a trip to think that she’s communicating with us! Anna has cut her 3rd tooth. We suspected she was teething, but I was focused on her top gums (typically babies cut the top 4 after the bottom 2). It was a total surprise to me when I noticed the top of a tooth on her bottom gum!
Anna’s therapy is going well, too. She’s started to pull up to a kneeling position and often to standing (with a little help from Mom or Dad). This evening she suceeded in pulling up to standing from a sitting position all on her own! Now if she could just get from lying to sitting, there’d be no stopping her. She’s pretty much obsessed with pulling up and standing now. Much to her chagrin, we’re very much still working on the crawling-thing, as it is a keystone skill for her. You don’t usually think of crawling as more than a means to get around, but it is MUCH MUCH more. The hands and knees position facilitates sitting up, kneeling, pulling up, etc. etc. We are working on strengthening her left arm so that it can support her weight when she’s in the hands and knees position. For those that haven’t seen Anna lately and wonder whether she’s mobile at all, she IS getting around by commando-crawling. She uses her arms (and legs) to drag her body around. And she’s fast! We’re in the process of installing baby gates to keep her from taking a nasty spill down the stairs. Talk about some strength…try pulling your body around with just your arms (and a little help from your legs).
December 15th, 2006
Neal’s eye surgery happened today and I’m pleased to report that everything went well! The laser surgeon described the process as “spot welding” around the holes in his retina so that they do not lead to a retinal tear. Neal’s feeling pretty good, all things considered. His eyes will probably be dialated throughout the day tomorrow (which anyone who’s ever been dialated before can attest - is a total pain because you can’t do jack! No reading, no watching TV…just staring at the wall while wearing dark glasses). He also has a terrifically sore throat due to the tube they inserted in his throat while he was out. Other than that, his eyes are supposed to be back to near normal tomorrow - maybe a little scratchy-feeling. Laser surgery is pretty darn amazing.
December 15th, 2006
I just found out I’m going to have to have laser eye surgery on Friday.
It’s a surprise to me as well. Honestly, I feel fine and don’t notice any problems at all with my vision (the voices in my head are another matter…). But I went to the eye doctor right before I left my old job just to use up the vision benefits before they went away, and the doctors found what they call “lattice degeneration”, some holes in my retina (eek!), and some significant “traction” (huh?), all of which lead up to imminent “retinal detachment”.
Here’s a Wikipedia article on the subject, for the curious.
So I’m in for some preventative lasering on Friday.
It’s a quick procedure, and I’ll get to be unconscious through most of it (Good news: I really enjoy being unconscious!). Recovery time is super fast (I could go to work the next day, which I won’t do because it’s Saturday), and the prognosis is generally good.
Funny thing: We’d never have known there were problems had I not quit my job a couple of weeks ago! So, um, thanks to Foraker Design?
December 14th, 2006
Where did November go? We’ve had a lot going on lately - family visiting, changing jobs, therapy appointments. I often feel as if I’m running just to stand still.
Hope everyone had an enjoyable Thanksgiving holiday. We spent Thanksgiving in Fort Collins with Neal’s family this year. His brother and sister-in-law flew in from Southern California and his cousin from Germany, Sandra, joined us, too. She’s currently doing a study abroad program at a school in Aspen. This was Sandra’s first Thanksgiving celebration. The verdict? She likes pumpkin pie, but she likes pecan pie better. 
All of the relatives enjoyed spending time with Anna and it seemed Anna enjoyed spending time with them! I’ve uploaded some pictures of our festivities.
While Colin and Roby were here we had an early Christmas. Anna enjoyed opening everyone’s presents (actually, that’s a lie…she enjoyed eating the paper. The opening of the presents was simply a means to an end). Thank you Colin and Roby for the gifts! The reader you gave Neal has already been put to good use. Did you know that dolphins nap with one eye open?
Anna’s recovering from another one of her month-long colds. At the one month mark I took her to the doctor. From her symptoms the doctor thought she probably had a sinus infection. She’s in the middle of a 10-day course of antibiotics right now. God bless the person who created flavored medications. I can’t imagine these antibiotics taste very good on their own, but with flavoring Anna actually likes them. When I say she likes them, I mean she gets all excited when I bring out the medicine-filled dropper. I suppose it could be worse, she could hate them and kick, scream and spit when I gave them to her, but there’s just something wrong about a baby getting super-excited about taking medication. She does the same thing with the Tylenol. Yippeee…give me my drugs!
I forgot to mention that Anna has gone to her first swim lesson (loosely defined). We thought it would be a good idea to introduce her to the water earlier rather than later, and also thought that the water might have a therapeutic benefit. Anna’s therapists agreed. In water she gets instant feedback when she moves her arms or legs. She seemed to like it, but the water in the pool was very chilly. Thank goodness the lesson only lasted about 30 minutes; otherwise we might have had an Anna-cicle on our hands. We bought a little nyoprene swimsuit that should keep her trunk a bit warmer. We haven’t had a chance to try it out yet because Anna’s been sick. I hope that we’re all healthy this Saturday for her next lesson. We’ll see if the wetsuit makes a difference.
I’m going to post a movie soon of Anna babbling. The week before Thanksgiving Anna went from single syllable vocalizations to babbling like a brook. It is such a joy to listen to her “ba ba ba ba ga ba da da”. She’ll talk to anyone who will listen, and even those who don’t. It was the most bizarre thing, she literally started babbling overnight. On Wednesday she wasn’t saying much of anything, and on Thursday she wouldn’t stop talking. She’s also figured out how to make noises by moving her fingers over her lips. She’ll even mimic you if you do it first. She’s got “dada” down pat; we’re stil working on “mama”. And we *think* we may be seeing the beginnings of Anna’s first sign: food! It’s honestly hard to tell whether she’s just being orally fixated at the moment or actually trying to communicate.
This last Friday our daycare arranged for Santa to visit during the morning. Friday isn’t one of our normal daycare days, but I wanted Anna to have a picture with Santa. We dressed up in a new dress that Granny Debbie bought and stopped by the daycare center. It was so fun to watch all the kids of different ages sit on Santa’s lap. Several from Anna’s room were completely freaked out by the man in the red suit. When it was Anna’s turn the photographer told me to keep Anna facing away from Santa while I placed her on his lap. Tricks of the trade, I guess. Anna was fine with Santa. She stared at his beard (she has a thing for men with facial hair and hats) and seemed quite content. She wouldn’t smile despite my efforts at tickling her and generally making a fool of myself. All was well until…Santa spoke. She started crying and the photo-shoot was over.
In other news, Anna’s therapy is going well. Despite a two-week interruption of our routine, her therapists still see she’s making progress. This is a good thing because I was feeling tremendously guilty for not being as diligent as I could have been about making sure we did all our exercises. I guess this is something that I’m going to have to get used to. There will be weeks when Anna’s therapy schedule is thrown off by holidays, illness, whatever. Being a goal-oriented person, I am finding it difficult to remember that this is a long process, and that nothing is going to change overnight - no matter how many exercises I do with her. Anna has made such incredible progress in the short time since we’ve been working with her. Neal reminds me constantly to think about where we were just a few months ago. He also acknowledges how hard this is for everyone. We’re having to teach Anna many of the skills her peers just learn on their own. That said though, Anna is very bright and picks up on things rather quickly. This evening she amazed us both by following the steps she learned on Thursday to pull herself up to standing (with help, of course). Those are the moments when I am so incredibly proud of her.
Anna is still commando-crawling, and getting pretty good at it, I might add. She seems to resist going up onto all fours. Her arm is getting stronger and stronger, though. She’s also using her arm/hand much more these days. She’s bringing it to midline to play with toys (as a helper hand). Anna’s occupational therapist has recommended that we get a Joe Cool strap for her thumb. This strap should help pull her thumb out so that it isn’t tucked in as much. Kathy thinks that this might encourage her to play even more with her left hand. As I mentioned previously, Anna is working on the steps to pull herself to standing. She has been attempting the brute force method for the past week or so - trying to pull up using just her arm strength. Her physical therapist thought it would be best to teach her the proper steps before she develops some bad habits. Pulling up is a big challenge because she isn’t really transitioning well from being on her tummy to sitting. It would all be a lot easier on Anna if she were able to get up on all fours, but we’re working on it nonetheless. We’re also working on helping Anna recognize that her left hand can do things independently of her right (i.e. that she can have objects in both hands and can chew on either one of them). This one is going to take a lot of patience on both our parts.
December 3rd, 2006
It is absolutely amazing how quickly time flies these days. We’ve been quite busy, as usual. Granny Debbie returned home to Kansas yesterday after a week-long visit. We miss her already! I hope she had a nice time visiting her grandbabies, because I know we certainly enjoyed her visit. Neal and I went out on our very first date since Anna was born. Granny Debbie watched Anna while we went out to eat. Of course, we spent about 50% of our time away talking about Anna and wondering if she was giving my Mom a hard time! It was really nice to have some time to ourselves, though.
On Sunday we celebrated Henry’s 1st birthday! Speaking of time flying, I can’t believe that it was one year ago that we rushed to the hospital to be with my Sister at Henry’s birth. It literally seems like yesterday. Henry seemed to enjoy himself at his party. He was a little confused when everyone sang to him, but enjoyed the attention as he made a total mess of himself and his cake. Happy Birthday H-man!
Last week we heard from the doctor’s at Children’s Hospital regarding Anna’s blood work. Anna does not have a clotting or bleeding disorder that caused her stroke. From what it sounds like, this was an isolated incident. This is all very good news because it means she is not necessarily at increased risk for additional strokes.
I realized I haven’t given any reports on Anna’s occupational therapy appointments. So far we’ve had two session and we’ll have another one this afternoon. Thursday is shaping up to be a busy day for us. Anna has physical therapy every other week and occupational therapy every week on Thursdays: one in the morning, one in the afternoon. Our first OT appointment didn’t go so well, as Anna was cranky and very skeptical of Kathy. Last week’s session went much much better. I made sure she’d had a nap and a snack before the session started.
Kathy was quite impressed with Anna’s progress. Anna has been relaxing her hand more these days, which is a great thing. If she’s having a good Bob-day, she fists her hand only slightly and most of the time it is open. Of course, there are those days when it seems like her hand is clenched very tightly and no amount of stretching will make it relax. I’ve tried to correlate it to something - lack of sleep, hunger, stress, not enough stretching - but I haven’t nailed down a definite cause yet. I doubt it is any one thing that causes her to tense up. Overall, Kathy told us to continue doing what we are doing: a little constraint therapy, sensory work on her left side, stretches, etc. We’ve been trying to strengthen Anna’s left arm by doing lots of weight bearing exercises: baby push-ups, leaning and propping. I can really see a difference in how long she can hold herself up using her left arm.
I believe Anna tries very hard to please us and works exceptionally hard at the tasks we give her. I don’t mean to be sappy, but it often brings tears to my eyes when I see how hard she is working to do something. I remind myself constantly that what she is going is very hard work. I know that I couldn’t do many of the things that I’m asking her to do! And yet, she furrows her brow, grunts a little, and pushes herself a farther. What a trooper.
November 16th, 2006
It’s been quite awhile since we’ve posted anything. It would be an understatement to say that we’ve been a bit busy lately. With doctor and therapy appointments, a trip to Kansas, and family visiting, there hasn’t been much time to sit down and upload pictures or write a blog entry. I’ll try to remedy that here!
I’ve uploaded a ton of pictures to our site. Be sure to check out more than the six pictures you see in the sidebar. I guess you could say that what I uploaded today pretty much covers the month of October!
During the first part of October we traveled back to Kansas for my cousin Aaron’s wedding. Anna and I (and Max, of course) took the opportunity to spend some time with the grandparents during the week prior to the wedding. We had a great time with Granny Debbie and Papa Rex, and I think Great Grandpa Jack enjoyed seeing Miss Anna, too. Neal did his usual traveling madness: he drove out with us on a Saturday, flew back to Denver on a Sunday, flew back to Kansas on a Thursday, and drove home with us on a Sunday. He certainly put in some mileage there. Anna, Max and I were extremely happy that he decided to join us on the long drives across the high plains.
Aaron and Shayla’s wedding was very nice…short and to the point (just like they wanted it)! It was great to see all the family who drove in for the event. That’s what I love about weddings - you have the chance to see family that you hardly ever see! We also were able to spend some quality time with Great Grandma Winnie. Everyone had a great time at the reception. One highlight was the pastor teaching everyone how to do the electric slide! Henry fell in love with the DJ’s lights and was determined to touch them despite Jo’s best efforts to dissuade him. And the BBQ was excellent.
When we returned from Kansas, Anna had her first physical therapy appointment with Kathryn from Tiny Tim. She did an initial evaluation of Anna while I filled out paperwork. She seemed to think that Anna’s biggest challenge will be keeping her left hand open. I thought that was good news! We were given a list of stretches, exercises and activities to do over the next couple of weeks until we see her again. I had a good vibe from Kathryn and I think that Anna likes her, too. We also were able to finalize our occupational therapy assignment. We’ll be starting her OT with Kathy this Thursday.
Granddad Sam and Grandma Mary came to visit us the weekend after we returned from Kansas. We didn’t do anything special - like go to the mountains or zoo. Instead, we all hung out at home and played with the babies. Granddad Sam read many a book to Henry and Anna…over and over and over and over again. And I think Mary had a fun time just playing with the babies. We certainly enjoyed having them here! I hope they don’t wait another year before they come out again!
Last week Anna had 3 different doctor’s appointments. On Monday she saw the pediatric ophthamologist, on Wednesday she saw her neurologist, and on Friday we went to the Stroke Clinic at Children’s Hospital. Here’s what we now know: Anna’s vision is probably going to be fine. There may be some issues that develop as she gets older, but at this point the doctor doesn’t see anything to make him believe that she’ll have any problems.
We were able to see the MRI images at our appointment on Wednesday. The stoke is located in the area of the brain in charge of controling movement - specifically, movement of the muscles of the arm/hand and leg on the left side. The neurologist explained that this is the same area that is affected when someone has tremors due to Parkinson’s. On the computer screen the stroke area was about the size of a quarter, which seemed huge to me until the doctor told us that most strokes she sees cover a much much larger area of the brain. The image on the screen was much larger than Anna’s head, so Neal and I imagine that the actual area is more like the size of a dime.
And on Friday we spent the entire day at Children’s Hospital. During the morning Anna had a neuro-psych exam. They wanted to determine whether or not the stroke has caused any problems with her cognition. There isn’t a whole lot they can do with a 7-month old as far as testing goes, but what they were able to do indicated that Anna doesn’t show any signs of cognitive difficulties. She had problems with those parts of the test that involve bi-manual tasks, but we knew that would be the case! Otherwise she did quite well and scored above the mean.
Later that day we met with a host of doctors from various departments at Children’s: rehabilitation, hematology, and neurology. Several teams of doctors came to examine Anna. They poked, prodded, pulled, stretched, shined light, poked again, tapped on reflex points, stretched again. Poor Anna. Through it all she maintained a sunny disposition despite having snot running out of her nose (she has another cold), drool stringing from her mouth, pain radiating from her gums (teething), and a nasty nasty cough. What a trooper. I know the experience was not a pleasant one for Anna, but it was very positive for us. We learned a lot about Anna’s stroke and her prognosis. We still don’t know exactly when the stroke happened, or what caused it, but we do know that it probably happened in utero toward the end of the second and beginning of the third trimester, and that it probably isn’t due to a blood clotting disorder. They are doing blood work to make sure that is the case. The rehab doctor was extremely encouraged by all that Anna is doing so far. She thinks that there will be very few remnants of the paresis when Anna gets older, and the neurologist said that depending on how Anna responds to therapy, this may all be “our little secret.”
So there you have it…the most up-to-date information. I’ll try to be better about posting pictures and info in the coming months. For now…enjoy!
October 31st, 2006
Our neurologist called yesterday evening and gave us the results of Anna’s MRI. The MRI confirmed the initial diagnosis - Anna did indeed have a small stroke on the right side of her brain. We have been referred to the stroke clinic at Children’s. Hopefully, after our appointment with them we will know a bit more about what may have caused the stroke and the full extent of the damage to Anna’s brain. We’re waiting for them to call us to set up an appointment.
Meanwhile, we’ve been working with the folks at Imagine!. Imagine! is a local, private, non-profit organization established in 1963 that provides support services to people with cognitive disabilities (including epilepsy, cerebral palsy, Down syndrome, and autism). We’ve been assigned a social worker (she’s wonderful — caring, engaged, efficient, knowledgeable) who is helping us navigate the various national, state, and county-wide support systems for kids with CP. So far this has been a fantastic experience, and we’re amazed at how fast all this is moving. Since our initial diagnosis on September 12, we’ve met with our case worker at our house to our many options. To get the process moving we took Anna for an “interview” with a physical therapist (gross motor), an occupational therapist (fine motor), and a school district nurse (hearing, vision) with the folks at ChildFind on Monday morning. (ChildFind is a national screening and evaluation program “designed to locate, identify, and refer as early as possible all young children with disabilities and their families who are in need of Early Intervention Program (Part C) or Preschool Special Education (Part B/619) services of the Individuals with Disabilities Education Act (IDEA)“). After her interview we were told that Anna’s been approved for both PT and OT, and that the next step would be to locate physical and occupational therapists to work with Anna.
Well, last night (just a day later!) we learned that our Imagine! social worker sent us an email:
I have located therapists that have availability through an agency called Tiny Tim Therapeutic Outreach. This is a program in Longmont that serves children birth to three and beyond. They have a developmental preschool program as well. I have several families using their services and have been very happy. I am planning to get all the information to them by this Friday so they can hopefully be ready to start the week of [October] 16th.
We couldn’t be happier. Tara had already heard about Tiny Tim from the director of our daycare (Sunset Academy). Tiny Tim is located literally around the corner from Sunset, and there are kids from Sunset who spend afternoons at Tiny Tim. And so it turns out that the directors of both facilities are good friends who’ve worked together for years. We’re hoping that Anna will be able to enroll in the Tiny Tim daycare when she gets to be about three years old if she still needs help at that point.
All in all we think this is great news. The MRI confirmed the initial diagnosis, and while there’s more to learn on that front it’s still good to know what we’re dealing with. Meanwhile, with the help of the folks at Imagine! we’ve been able to start to navigate the support systems available to Anna, and to get moving on the path of therapy.
Therapy, we feel, is the key. Even just working with Anna ourselves we’ve seen such enormous improvement in her motor skills over the past few weeks and months, and we’re eager to get her paired up with some professionals who can show us how to do this right.
Moreover, it’s been great to get confirmation from our doctors, our social worker, and the therapists at ChildFind that Anna is developmentally “on track” in all other areas (and even ahead of the game in some areas like social skills). At a time like this it’s been important to get some confirmation of what we, as parents, already believe: That despite some relatively minor problems with her left side, she’s a healthy, happy, bright, curious, active, engaging, wonderful little girl.
October 4th, 2006
Anna had her MRI today, and we’re happy and relieved that it is over! We weren’t allowed to watch the procedure or be there when they put her under, but maybe that was for the best. I guess they had a very hard time finding a vein for her IV. She has stick marks on each of her hands and feet and a couple on her arms (thank goodness she was already mildly sedated with gas while they were sticking her!). The MRI went well except that she woke up half-way through! The doctor and technician noticed she was moving her feet…and then all of the sudden she was waving her arm around. They had to give her a bit more medicine to keep her under during the rest of the scan. When they called us back to her recovery room she was pretty limp and uncoordinated. Within 1/2 hour she was mostly back to normal. She was rather grumpy and very hungry. Understandable, considering she hadn’t eaten anything for over 6 hours at that point.
What a stressful day. My body feels like I’ve been excercising heavily or something…must be due to the fact that I’ve been tensing my muscles all day long. I’m ready for some sleep. I think Neal is too.
Incidentally, we won’t know the results of the MRI for some time. We have an appointment with the neurologist for late October (her first available appointment). We’re going to see if we can move that date up some, but that’ll more than likely be possible only if someone else cancels. We’ll see what we can do.
For now…sleep. Good Night.
September 28th, 2006
Last Friday Anna had her six-month check-up. She’s doing great! She is now 27 1/2 inches long and weighs 17 lbs 4oz. (90-95th percentile for height and 75-80th percentile for weight). We had our normal round of shots - three total, which is one less than last time. Those are always so much fun for both of us! Our doctor was very impressed with the progress Anna’s made on the use of her left hand/arm since she saw us about a month ago. I thought that was encouraging.
Anna’s two bottom teeth have finally pushed through, so we’re a little less grumpy about our gums these days. Thank goodness! Although now that we’re not using tylenol and teething tablets before bed, getting her to go to sleep has been a real challenge. Tonight she screamed for about an hour total (broken up in 10-15-20 minute increments). What a nightmare.
This week Anna is “skipping a grade” (as Neal likes to call it) at daycare. I’m really excited about this move. Anna is at the top of the food chain in her current room. She’s a few weeks younger than the two oldest boys in her room, but neither of them is sitting independently. The rest of the crew is much younger and barely rolling over. I’m hoping that seeing babies crawling and whatnot will give Anna some ideas that she can try out. I swear that she is learning things from her cousin Henry who is crawling all over the place!
I neglected to post anything about my Mom coming to visit during the week before last. We had a wonderful time and we hope she did too! She spent most of the week playing with her grandbabies and buying them outrageous toys. As always, it was great having her here. We’re very much looking forward to seeing the entire Kansas family when we go home in October for my cousin Aaron’s wedding. Anna and I will be spending a week visiting everyone.
September 24th, 2006
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