Posts filed under 'Parenting'
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
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
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
One year ago today you were born, little one, and what an amazing year it’s been.
You’ve learned so much in these past few months: How to breathe, how to cry, how to nurse, how to burp, how to roll over, how to sit without falling over, how to sleep through the night, how to laugh, how to babble, how to giggle when tickled, how to drink from a bottle, how to say mama and dada, how to make the signs for food, milk, and the cat, how to sit up all by your self, how to crawl, how to stand up, how to make friends, how to play with toys, how to read books, how to grow teeth and just a very little bit of hair, how to snuggle, how to eat grown-up food, how to find your way across the room, how to cruise around the coffee table, how to climb stairs, how to clap, how to pick up things with your left hand, how to wave like a princess, how to blow big smacking kisses across the room, how to give hugs, how to give kisses, and how to light up an entire room with your beautiful smile.
And we’ve learned so much too: How to give birth, how to change diapers, how to give baths, how to dress tiny babies in tiny clothes, how to install car seats and baby gates, how to nurse, how to burp a baby, how to make a little girl smile, how to function on very little sleep, how to make a bottle, how to make breakfast, how to teach a baby to stretch, clap, sit up, eat, crawl, stand, sleep through the night, and climb stairs, how to cope with the fears all parents face, how to sing, how to distract, how to be more organized and not worry about when we aren’t, how to be more patient, how to love each other when we’re under fire, and how to love you, unconditionally, always and forever, for you are the most wonderful and rewarding thing in our lives.
Thank you, Anna, for joining our family and for and teaching us so much. Happy birthday, dearest girl. We love you.
March 15th, 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
Anna is wide awake and ready to start her day an hour and a half early.
The joys of parenthood abound.
February 20th, 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
As I’ve mentioned in past posts, we’re working on getting Anna to sit up from being on her tummy. Yesterday morning I put Anna in her crib for a nap. About an hour later I went in to get her because I could hear her playing and chatting away. I walked in and was pleasantly surprised to see Ms. Anna sitting up in her crib waving at me! Now that she knows she CAN do it, I’m hoping we’ll be seeing more and more of her sitting up.
I took this opportunity to work on a little child-proofing. Since I KNOW Anna can pull herself to standing if she’s in a sitting position I thought it would be a good idea to lower the mattress in her crib. I’ve also been installing covers on all the electrical outlets. She’s very interested in drawers and cabinets lately, so I’m going to be installing some of those cabinet/drawer lock-thingies soon.
January 23rd, 2007
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
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