Posts filed under 'Health'
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
The Radiology Department at Children’s called this afternoon. They had a recent cancellation and will be able to schedule Anna’s MRI earlier than anticipated. We’re all set to have her MRI on next Thursday, Sept. 28th in the afternoon. As I think I mentioned in my previous posting, this is a sedated MRI. They have to sedate her because there is no way that a 6 month old will be still for 30 seconds, much less 45 minutes! I’m nervous about the entire thing, but I feel better knowing that the test will be done at Children’s. Like anyone going under anethesia, she can’t have solid foods 8 hours before the test and breast milk is allowed up until 4 hours before the test. I imagine she’ll be one hungry chick when she wakes up from the anethesia!
September 20th, 2006
About a month ago we took Anna into her pediatrician because we were concerned with the use (or disuse) of her left hand (affectionately known as Bob). Mom, being the neurotic type, had done some research which stated that infants are basically ambidextrous until at least 12 months of age, and that any hand preference exhibited before that age is a developmental red-flag that points to a neuromuscular issue. Well, Anna is VERY right-handed at 6 months and we thought it would be best to have her checked out. Our pediatrician confirmed our suspicions that Anna’s preference for her right hand (otherwise known as Martha or “bossy right”) was problematic. Furthermore, Anna showed some definite developmental delays in the use of her left hand. She believed that Anna’s core body strength was very good and that she was developing equally on both sides, but that her left side seemed weaker than her right with her arm more affected than her leg. Her initial thoughts were that she’d suffered a stroke (yes, babies have strokes!) or had some malformation of the brain. She referred us to a pediatric neurologist from Children’s Hospital in Denver for more tests and evaluation.
Unfortunately, we had to wait two weeks for our appointment with the neurologist. As you can imagine, Neal and I were pretty much beside ourselves. We were worried and upset: will Anna be able to run and jump, will she be able to type or play the piano? Will she have difficulties with speech or learning? Will she be able to do everything that she wants to do? These types of questions, among others, consumed our thoughts. I basically flipped out and let my obsessive/compulsive tendencies have free reign. I read more and more about Anna’s symptoms and became more and more distraught. I basically had her diagnosed before we’d even seen the specialist: cerebral palsy.
During those 2 weeks of waiting we discovered that we have an amazing support network. The director of our daycare center has a daughter with a mild case of cerebral palsy. I met her daughter and you’d hardly know that she had any impairment at all! After years of therapy and hard work, her daughter graduated from high school and college and works at the daycare center while looking for a full-time job. The director has already been a wonderful resource. She has offered to teach me the therapy games she used to play with her daughter and has purchased a few toys for Anna that promote use of her left hand. She wants to be an active part in Anna’s therapy program and will be working with Anna while she’s at daycare. What a surprise and relief!
Last Tuesday we had our appointment with the specialist from Children’s. I was very stressed and anxious. We went in knowing that there was definitely a problem and that it was probably cerebral palsy, but we didn’t know what level of severity or what other areas of Anna’s body may be affected. She asked us many questions about my pregnancy, Anna’s birth, and her development. She confirmed what we suspected: Anna has cerebral palsy (non-specific left-sided hemiparesis). However, she was able to say that it was a very mild case and that with therapy and early intervention, she should be able to do anything she wants (Neal: Like become President, for example). At this point, the doctor does not believe that Anna’s speech or cognitive abilities are affected. She wants us to have Anna’s vision tested by a pediatric ophthamalogist as soon as possible to rule out any vision problems, although she doesn’t think that there are any major issues. And most importantly, she has ordered both physical and occupational therapy for Anna.
Sometime during the next month, Anna will be going in for a sedated MRI down at Children’s. I have to admit, the sedation part freaks me out a little bit, but if it has to be done I’d prefer it be done at Children’s with anesthesiologists who work only with children. The scans will give the doctor a better idea of the extent of the damage to Anna’s brain and what may have caused it. If it turns out that Anna did have a stroke, the doctor would like Anna to visit the stroke clinic at Children’s to rule out the possibility that she has some underlying clotting disorder that might cause her problems as she grows. We’ll see what happens.
During the days since our appointment I’ve been attempting to navigate the social services maze in an effort to get Anna “in the system.” We’re awaiting an evaluation with the St. Vrain Valley School District’s Child Find program. It’s my understanding that they can help coordinate Anna’s therapy and bring together all the interested parties (i.e. daycare, therapists, etc.). I’m hoping that our pediatrician can help us in this department as well. We have Anna’s 6-month check-up on Friday. She’ll have the information from the neurologist and we can proceed from there.
We’re remarkably calm about the entire thing. We have a plan of attack now. I know I will feel even better once we find physical and occupational therapists and we start our sessions. In the meantime, we’ll continue to do our “common sense” approach when working with Anna. She’s really made a great deal of progress in such a short time. We’re very hopeful. Who knows, she may very well grow out of this. Only time will tell. One thing is for certain, she’s still Anna! And we love her so very much.
September 17th, 2006
The teething fairy has been to visit us! We don’t like her. We wish she would do her thing without causing Anna pain. Yes, Anna is teething and it is not fun for anyone involved. She has one tooth that has broken through the skin and another that is close. She’s pretty fussy and generally not her happy-go-lucky self lately. And the nights have been especially fun. She is either in pain or is testing us because she will not go down for bed without a serious fight. This often involves anywhere from 1/2 to 2 hours of screaming (I gave up after 2 hours and took her downstairs with me – it might have lasted longer if I hadn’t. ). Anna is ahead in the on-going Anna vs. Parents match-up.
In other news, Anna has moved up to eating cereal twice a day now: rice and oatmeal. Very exciting. She loves to eat. She reminds me of a baby bird when we are feeding her: mouth wide open and making noise! Next week she will be 6 months old and we plan to start her on some vegetables. Cereal is pretty easy to clean up…I can’t imagine peas and other veggies will be! We’ll make sure to document the event with pictures.
Yesterday Anna, Henry, Jo and I went to the zoo. It was Anna’s first trip to the zoo and she could have cared less. Both the kids were more interested in all the people and other babies than they were in the animals. Anna found a strap on her stroller the most exciting thing of all! Jo and I enjoyed getting out for the day. It was kind of a proof of concept: we can take the two kidlets out for the day without much trouble.
So Anna would really like to type something here, so I’d better close. Here are her parting words: hn .u mn h v tbn jhiy;l\]’
?>}”>?, pnoj,[kn uj 6 r333333333333333e
September 8th, 2006
It took two horrible nights for Mom to come to the realization that maybe Anna should be sleeping in her own room. Sunday night was perhaps the worst night since she was an itty-bitty baby. She was up every hour and was in no mood to sleep from 2-4 am! I was so incredibly exhausted on Monday and so was she, which meant she was kind of crabby. Crabby baby and sleepy mom…not a good combination.
So yesterday I made the gut-wrenching decision to move Anna to her room (yes, I know, it sounds silly and melodramatic, but it was very difficult). All day yesterday I put her in her crib for naps and we continued when it was time for bed. She only screamed for 30 minutes (broken into 5, 10, and 15 minute intervals) before she nodded off. She woke up once at 11-ish and then slept solidly until 5:30 this morning! Here’s hoping we’re starting a positive trend and that this wasn’t a fluke.
My sleep was rather fitful, but mostly uninterrupted. I’m kind of paranoid about the SIDS thing. When she was sleeping beside our bed in the bassinet, I could hear her breathing or peek in to make sure her chest was moving up and down. Not so when she’s in the other room! You can’t hear her breathing on the baby monitor and checking on her involves opening her bedroom door, which always runs the risk of waking her. I imagine it will get better with time.
On an unrelated note, Anna had her 4-month vaccinations on Friday. Whereas we didn’t have the 3-hours of crying, we still had the elevated temperature. She ran a fever for about 24 hours (up to 101.5 degrees), but seemed to be okay otherwise. The doctor did not give her the DTaP (the one with whooping cough), suspecting it caused her reaction last time, but maybe one of the others is causing the problem? We’ll have to see what happens at 6 months. Needless to say, I’m going to schedule her appointment for early in the day on Thursday. Be prepared!
This weekend Anna had her first day of full health in a little more than a month! Sunday was a great day (until the night, of course). I’m so happy to see her feeling better. What a drag to be sick for more than one quarter of your life.
August 1st, 2006
You there! Shhh! Heck, I’m probably typing too loudly as it is. And I’m honestly concerned that the crickets chirping away outside might wake the baby.
This realization hit me recently: It seems like we spend a lot of time tiptoeing around our own house these days.
I guess that’s just part of life with a new baby around. Especially when she’s been sick for so long. We try to do everything we can to make sure that when she’s sleepy she can actually go to sleep, and stay asleep for as long as she can. So we throw each other dirty looks as we’re putting away the dishes (that clink might wake Anna!) or get a drink (the ice maker is too loud!), and hope that the kid stays asleep.
Fortunately, the whole family had a good night last night. Tara slept. I slept. Max didn’t wake us up with his usual antics at three o’clock in the morning. And most importantly, Anna slept from about 9:00pm through to 4:30am — without coughing! I don’t think she’s entirely over her cold, but the antibiotics do appear to have helped a bit, and she’s seem to be on the upswing at this point.
I’m going to go and try to sneak off to the gym now. Very, very quietly…
July 26th, 2006
Anna and I made another trip to the doctor due to this never-ending cold. The doctor gave her some nice pink antibiotics. We haven’t tried them yet, but I’m looking forward to it (not). I guess it is standard practice for them to give you a bit extra due to the fact that it frequently comes right back out of baby’s mouth! At least it is only administered once a day.
Just to be on the safe side, the doctor recommended a chest x-ray. Now that is an interesting process. How does one give a squirmy 4-month old an x-ray? Well, having experienced it today – I can tell you firsthand. They sit her in a little seat (kind of like what you’d have in a walker), which is attached to a verticle plastic tube that can be adjusted to the size of her mid-section. Her arms are kept over her head (also contained within the tube) and her head is strapped in place. Boy, she did NOT like it. The imaging techs said that this was a good thing because the screaming opened up her lungs allowing them to get a good picture. Easy for them to say…they didn’t have to deal with the aftermath!
We don’t know anything yet about the x-rays. I’m assuming the doctor will get back to us ASAP if there is a problem. In the meantime, we’re thankful that babies of 4-months of age do not have good memories. ‘Cause like the shots, she looked at me like I was a horrible mother – “How can you let them do this to me?”
July 21st, 2006
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