Plugging along - that's how I would describe these last several weeks - just plugging along. Camilla has started 1st grade and although there was a little bit of a bumpy transition (just in routine, seizures, rest, stress) things are really good and Camilla still loves to go to school each day. She is in a self-contained classroom for a large portion of the day but still goes to lunch, break and other activities with her class. Although we have not seen very much progress in her ability to focus, absorb information or communicate since the surgery, we are seeing GREAT progress since she has started school. Her teacher called the other day to say that Camilla had gone to the chalkboard, looked at her and said 'C' and then promptly wrote a 'C' on the board. HUGE PROGRESS! She has written the 'C' for me several times at home but I can't get her to say it. Camilla loves to swing, at school they make her say 'hi' before they will push her (this was a word that she already used and they are using it to make her communicate) and after following their lead she uses it regularly for us at home. Also, Camilla is making great strides in potty training. They are sticking to a schedule at school of pottying and she is continuing it at home. We have had several days where she has not wet a pull up and today I caught her in the bathroom, jeans down, pull up off and she was tting in the potty all by herself!
While these are great achievements for Camilla we are struggling with some other challenges regarding her development. After an intense summer of speech therapy we received her final report which put her overall communication skills at age 11 months (she's 6). Words can never describe how heartbreaking it is to see this in writing when it's reffering to your child. As long as it's not in writing or I don't have to say it - it's easy to be strong. When I see it in writing - I just try not to cry. It seems like I've been hit with a lot of that lately - whether it's a skills assesment at the pediatrician, the survey at speech therapy or all of the 'back to school' paperwork that forces you to realize your situation. And let's not forget the constant battle of avoiding all children Camilla's age - once this summer I was cornered while 3 little (adorable) girls exactly her age sang, danced and 'performed' parts of a play for me and since we were backstage while the play was going on - it was really difficult to escape all the while trying not to hurt their feelings - uuuugggghhhh! And last but not least let's not forget the telephone survey from the 'something or other to do with vaccinations' center. Well they only wanted to know about kids 12 mo to 4 years so I had to answer based on Crosby but with our experience with vaccines I was curious what the questions might be. The third one was 'has your child ever had a seizure or been diagnosed with any form of epilepsy?' From there they went on to ask all kinds of developmental questions I just grew sadder and sadder with each passing one, knowing that were they asking about Camilla my answers would be entirely different.
As for seizures, we are in a relatively good week and we are only seeing 2-5 each day. They are definitely different from before, she will freeze what she's doing and her left arm will stretch out and her head leans slightly to the left. She holds this position for several seconds and may or may not shake during this time. She seems to be only minimally disturbed following each one. Since sugery she was seizure free for 5 weeks, then had a really horrible several weeks of 15-20 per day and now we float back and forth between good (like now)and bad weeks (5-10 per day).
Camilla is set to return to Children's October 10-14 for a 96 hr EEG, PET scan, SPECT scan, MRI, lumbar puncture (redoing her genetic testing) all to see if they can locate a focal point(s) in the right hemisphere and determine if she is a candidate for ressection surgery. Please help us pray during this time, we are gathering more information and trying to decide whether to follow through with this testing at this time or postphone it for awhile. We are praying for wisdom and direction.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11
Thursday, September 15, 2011
Friday, August 26, 2011
Wednesday, August 17, 2011
the beginning-
**the following post was started on Camilla's birthday and I've just now had time to finish it**her birthdays are always tough days for me**it's so easy to remember how happy things were in the beginning
I remember the day so vividly - August 14th, 2005 - after 14 hours of labor and a normal, happy, healthy pregnancy and birth my little girl was finally in my arms. At 6 lbs 10 oz she was a tiny bundle of joy and I just couldn't hold or look at her enough. Camilla was a very good baby. We had no major issues with sleeping, pooping or feeding and she was just one happy little girl who was healthy and hitting all developmental milestones - until 6 months old. Looking back now those first six months hold some of the most precious memories and best times of my life.
When she was almost 5 months old she developed an ear infection - no biggie. We saw her pediatrician and he put her on antibiotics. The ear infection rocked on for several weeks but then at her six-month check up her ears were fine. We got a clean report and our shots and went on our merry way. Within the week Camilla began making these 'jerking' movements that would come in clusters. During the clusters her arms would both 'jerk' straight from her sides and her head would 'bob' slightly. Within the first couple of days of starting there were 8-10 'jerks' in each cluster and she was having about 10-12 clusters per day. At first we thought the jerks might be 'ear pain' (maybe the infection was back) because after each one she would put her hands on her face or ears and she would cry as if in pain. After a call to the ped he gave us some numbing ear drops and told us to use them when the first jerk began. After a couple of days we could tell the drops were providing no relief and the jerks were increasing so back to the ped we go - that was April 1st. After describing more details of the clusters and including that the drops were not helping our doc became immediately concerned. I will never forget the look on his face the first time he said the words 'possible seizures.' He recommended we go for an EEG - we could wait a couple of weeks to get into Children's or we could be in with a local pediatric neurologist the next day. We met with Dr. Syed the next morning who, after describing her symptoms, got on the phone to DCH and went ballistic on them when they could not get her into an EEG that day - that was April 2nd. So one more day to wait on the test. The morning of April 3rd we were at DCH for a 6 hr EEG - what a nightmare it was hooking her up for the first time ever - it's the only time we've had to use a papoose board. So 6 hrs later we are getting ready to head home - it's about 3:00 at this point - we assume we'll get a call tomorrow with the results and we are planning where to grab a bite before we make the trip home. As we are about to leave a nurse comes in and says that per Dr Syed's request the test results have already been emailed to him, he has reviewed them and he wants to see us in his office immediately. We drive a very silent drive across town to his office at the Northport DCH and are greeted at the door to his now closed office by a nurse. She takes us straight to a room where Dr. Syed is waiting on us.
Of course we are petrified by now - we knew it had to be bad - no one gets this type of treatment for things that are going to be ok - we had not spoken a word to each other or to Camilla for that matter - I sat shaking in the chair with Camilla on my lap while Brandon was in the chair to my right - and then came those words - "your daughter has Infantile Spasms, she will probably never walk or talk but the good news is that it's not fatal" - from there I just remember Brandon catching Camilla as I was close to collapsing on to the floor - I'm sure there were questions that followed and I do remember him taking us back to his office to let us look at the EEG and the 'tell-tale' hypsarythmia but I mainly just remember him leading us down a back stairwell to our car and giving us instructions on what to do once we got back to DCH to admit Camilla indefinetly.
I remember that drive back to DCH, one of those memories that haunts your dreams. It was so quiet except for tears and one cluster of seizures that Camilla had on the way - almost like they were rubbing it in. I'll never forget the memory of feeling like we had left his office with a different child than we took in there. 3 days - that's all it took to turn our lives upside down. EVERYTHING was FINE, EVERYTHING was NORMAL - until it wasn't - 3 days.
Below are some pics taken during the first six months of Camilla's life...
I remember the day so vividly - August 14th, 2005 - after 14 hours of labor and a normal, happy, healthy pregnancy and birth my little girl was finally in my arms. At 6 lbs 10 oz she was a tiny bundle of joy and I just couldn't hold or look at her enough. Camilla was a very good baby. We had no major issues with sleeping, pooping or feeding and she was just one happy little girl who was healthy and hitting all developmental milestones - until 6 months old. Looking back now those first six months hold some of the most precious memories and best times of my life.
When she was almost 5 months old she developed an ear infection - no biggie. We saw her pediatrician and he put her on antibiotics. The ear infection rocked on for several weeks but then at her six-month check up her ears were fine. We got a clean report and our shots and went on our merry way. Within the week Camilla began making these 'jerking' movements that would come in clusters. During the clusters her arms would both 'jerk' straight from her sides and her head would 'bob' slightly. Within the first couple of days of starting there were 8-10 'jerks' in each cluster and she was having about 10-12 clusters per day. At first we thought the jerks might be 'ear pain' (maybe the infection was back) because after each one she would put her hands on her face or ears and she would cry as if in pain. After a call to the ped he gave us some numbing ear drops and told us to use them when the first jerk began. After a couple of days we could tell the drops were providing no relief and the jerks were increasing so back to the ped we go - that was April 1st. After describing more details of the clusters and including that the drops were not helping our doc became immediately concerned. I will never forget the look on his face the first time he said the words 'possible seizures.' He recommended we go for an EEG - we could wait a couple of weeks to get into Children's or we could be in with a local pediatric neurologist the next day. We met with Dr. Syed the next morning who, after describing her symptoms, got on the phone to DCH and went ballistic on them when they could not get her into an EEG that day - that was April 2nd. So one more day to wait on the test. The morning of April 3rd we were at DCH for a 6 hr EEG - what a nightmare it was hooking her up for the first time ever - it's the only time we've had to use a papoose board. So 6 hrs later we are getting ready to head home - it's about 3:00 at this point - we assume we'll get a call tomorrow with the results and we are planning where to grab a bite before we make the trip home. As we are about to leave a nurse comes in and says that per Dr Syed's request the test results have already been emailed to him, he has reviewed them and he wants to see us in his office immediately. We drive a very silent drive across town to his office at the Northport DCH and are greeted at the door to his now closed office by a nurse. She takes us straight to a room where Dr. Syed is waiting on us.
Of course we are petrified by now - we knew it had to be bad - no one gets this type of treatment for things that are going to be ok - we had not spoken a word to each other or to Camilla for that matter - I sat shaking in the chair with Camilla on my lap while Brandon was in the chair to my right - and then came those words - "your daughter has Infantile Spasms, she will probably never walk or talk but the good news is that it's not fatal" - from there I just remember Brandon catching Camilla as I was close to collapsing on to the floor - I'm sure there were questions that followed and I do remember him taking us back to his office to let us look at the EEG and the 'tell-tale' hypsarythmia but I mainly just remember him leading us down a back stairwell to our car and giving us instructions on what to do once we got back to DCH to admit Camilla indefinetly.
I remember that drive back to DCH, one of those memories that haunts your dreams. It was so quiet except for tears and one cluster of seizures that Camilla had on the way - almost like they were rubbing it in. I'll never forget the memory of feeling like we had left his office with a different child than we took in there. 3 days - that's all it took to turn our lives upside down. EVERYTHING was FINE, EVERYTHING was NORMAL - until it wasn't - 3 days.
Below are some pics taken during the first six months of Camilla's life...
Sunday, July 31, 2011
medical update-
So much has been going on lately with Camilla but I will try to give a quick update concerning her medical situation. Seizures continue and are now pushing 15 per day, they do seem to be worsening just a little with each passing week and her focus, hyperactivity and behavior problems seem to be worsening as seizures increase. Sleep is being interrupted during this time as well. We have also seen an onset of shaking - we don't know yet if it is medications, seizures, or ???? but Camilla is very trembly all the time - even to the point of no longer being able to grab something from someone's hand and not wanting to feed herself because she can't hit her mouth. Dr. Kim is currently increasing Lamictal, decreasing Depakote and considering the addition of Vimpat.
We have decided to move forward with the hospital admission in the fall that will work to find a focal point for the seizures. It would be a week-long admission to Children's and the tests we know of so far would include - MRI, SPECT scan, PET scan, lumbar puncture and an EEG for the length of the stay. These tests would decide if there is more surgery to follow. We are waiting for dates for this admission.
As for details on everything else - I'm just not in a place that I can tackle those emotions and realities on here right now - sorry. Maybe soon-
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11
We have decided to move forward with the hospital admission in the fall that will work to find a focal point for the seizures. It would be a week-long admission to Children's and the tests we know of so far would include - MRI, SPECT scan, PET scan, lumbar puncture and an EEG for the length of the stay. These tests would decide if there is more surgery to follow. We are waiting for dates for this admission.
As for details on everything else - I'm just not in a place that I can tackle those emotions and realities on here right now - sorry. Maybe soon-
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11
Tuesday, July 12, 2011
manic monday...
...because that's what it was! What a nightmare that day turned out to be - I don't even like thinking back to that day it was just so horrible for so many reasons!
Here's the day that we had planned:
9:30a arrive and Children's and get hooked up for 2 hr EEG
11:45a appointment with Dr. Kim (neurologist) to get results of EEG and talk about new plan to treat seizures with VNS, meds, etc...
1:00ish grab some lunch then head to Alabama Adventure to ride some rides then hit the waterpark
Here's how the day unfolded:
9:30a arrived at Children's
12:15p finally called back to get hooked up for EEG
1:45p unhooked the EEG early
2:00p lunch at the hospital cafeteria
3:00p appointment with Dr. Kim
4:30p left hospital
NO Alabama Adventure :(
Well, I certainly wouldn't have won any popularity contests with the staff at Children's on Monday but they (of all people) should know that you don't keep special needs children (families) waiting almost three hours without letting them know what is going on. If they had only told me that there was another child in the room Camilla was scheduled for we could have made much more exciting plans than terrorizing the waiting room. Once we were finally called back Camilla was in 'rare form' she was starving because it was now time for lunch, tired because we had woken her up early(so we wouldn't be late-insert sarcasm here) and already ill because she had been confined to the waiting room and had gotten in trouble like 25,000 times that morning. So now imagine having to hold her still in order to glue about 12 leads to her head!!! They would only allow one parent in the room so I had to hold her while the EEG tech put the leads on (you may remember from previous posts that Camilla has the 'gift' of superhuman strength) - I had to pin her arms by her side with legs straight out while lying on a bed, then I had to lay on top of her and push my head up against hers so she wouldn't shake her head continuously and all the while trying not to hurt her in this process. With 3 leads left to go Camilla finally passed out from exhaustion (and I almost did too). During an EEG they try to get the child to sleep so that they can see both the sleep and wake cycles. Camilla slept for about 20 minutes and woke up in a much better mood. She was very active for the remainder of the test but managed to only pull out 3 of the leads after an hour and a-half at which time the tech decided she didn't want to try to reattach the leads so she called Dr. Kim to see if she had enough info already - which she did and the test was over. Let me not forget to mention though that during the test the tech decided she was going to eat a candy bar - now keep in mind it is now almost 1:15 and Camilla has had no lunch and the tech will not allow her to have anything - let's just call this the time when the 3 leads were pulled off and Mommy took the candy bar away from the nice lady and put it in our bag for Camilla to have later :)
So after that ordeal was complete we all managed to stumble our hungry selves down to the cafeteria just as it was about to close for lunch (why don't hospital cafeteria's stay open all day - uuuuugggghhhhh - don't even get me started on that). Immediately following lunch we made our way to the clinic to see Dr. Kim. She had obviously heard how our day was going and was there waiting on us when we arrived. We had an extensive and good meeting with her and we were able to get so many questions answered and learn of all of our options since seizures have returned. Let me remind everyone that the docs never expected this surgery to 'cure' her seizures - this is considered to be a pallative surgery - so to them the fact that she went 5 weeks seizure free was fantastic. And we consider it fantastic too, but we also consider it a great dissapointment that they have returned with the frequency and severity that they have. She is having on average 5-15 per day and they seem to be presenting on the left side of her body. Dr. Kim agreed that that was too many seizures and that our #1 goal is still to stop all regular seizure activity.
After reviewing the EEG she found the left side of Camilla's brain to be clear!!!! That was fantastic news - in the past Camilla's seizures were so generalized that no focal point could be found on either side of the brain and once they did start they would rapidly spread to all points on both sides. She noted that the right side still has a considerable amount of activity and that is def where the seizures are coming from and why they are presenting on the left side of her body.
The next steps - Dr. Kim adjusted her current medications and we will continue to monitor her seizures for the next two months. After that time we will see Dr. Kim again and unless seizures have ceased we will schedule a time for Camilla to return for a week-long hospital stay in which she would undergo EXTENSIVE testing to see if they can find a focal point on the right hemisphere. If they are able to do so we would then consider ressective surgery - in which they would go in and actually remove the parts where seizures originate. This type of surgery is often referred to as a 'grid surgery' and is MUCH MORE involved and serious than her recent corpus callosotomy. I'm still a little in shock over the fact that we might have to consider another surgery but Dr. Kim told us not to be afraid of another surgery and that we are 'chasing' the seizures. If they are unable to find a focal point during the testing then we will continue to unsuccessfully control her seizures with her VNS and medication. I'm just a little numb from all this news...
We covet your prayers right now - we need them right now - I don't even know specifics to ask for you to pray about yet - we really are just numb and in shock -
I do want to thank all of you who continue to reach out to us in various ways - it is really amazing how you guys seem to show up with meals, cards or words of encouragement at just the right times. We are forever grateful for all of you who have prayed us through these moments of difficulty and weakness. YOU ARE APPRECIATED!
Apparently, God isn't finished with us yet...
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11
Here's the day that we had planned:
9:30a arrive and Children's and get hooked up for 2 hr EEG
11:45a appointment with Dr. Kim (neurologist) to get results of EEG and talk about new plan to treat seizures with VNS, meds, etc...
1:00ish grab some lunch then head to Alabama Adventure to ride some rides then hit the waterpark
Here's how the day unfolded:
9:30a arrived at Children's
12:15p finally called back to get hooked up for EEG
1:45p unhooked the EEG early
2:00p lunch at the hospital cafeteria
3:00p appointment with Dr. Kim
4:30p left hospital
NO Alabama Adventure :(
Well, I certainly wouldn't have won any popularity contests with the staff at Children's on Monday but they (of all people) should know that you don't keep special needs children (families) waiting almost three hours without letting them know what is going on. If they had only told me that there was another child in the room Camilla was scheduled for we could have made much more exciting plans than terrorizing the waiting room. Once we were finally called back Camilla was in 'rare form' she was starving because it was now time for lunch, tired because we had woken her up early(so we wouldn't be late-insert sarcasm here) and already ill because she had been confined to the waiting room and had gotten in trouble like 25,000 times that morning. So now imagine having to hold her still in order to glue about 12 leads to her head!!! They would only allow one parent in the room so I had to hold her while the EEG tech put the leads on (you may remember from previous posts that Camilla has the 'gift' of superhuman strength) - I had to pin her arms by her side with legs straight out while lying on a bed, then I had to lay on top of her and push my head up against hers so she wouldn't shake her head continuously and all the while trying not to hurt her in this process. With 3 leads left to go Camilla finally passed out from exhaustion (and I almost did too). During an EEG they try to get the child to sleep so that they can see both the sleep and wake cycles. Camilla slept for about 20 minutes and woke up in a much better mood. She was very active for the remainder of the test but managed to only pull out 3 of the leads after an hour and a-half at which time the tech decided she didn't want to try to reattach the leads so she called Dr. Kim to see if she had enough info already - which she did and the test was over. Let me not forget to mention though that during the test the tech decided she was going to eat a candy bar - now keep in mind it is now almost 1:15 and Camilla has had no lunch and the tech will not allow her to have anything - let's just call this the time when the 3 leads were pulled off and Mommy took the candy bar away from the nice lady and put it in our bag for Camilla to have later :)
So after that ordeal was complete we all managed to stumble our hungry selves down to the cafeteria just as it was about to close for lunch (why don't hospital cafeteria's stay open all day - uuuuugggghhhhh - don't even get me started on that). Immediately following lunch we made our way to the clinic to see Dr. Kim. She had obviously heard how our day was going and was there waiting on us when we arrived. We had an extensive and good meeting with her and we were able to get so many questions answered and learn of all of our options since seizures have returned. Let me remind everyone that the docs never expected this surgery to 'cure' her seizures - this is considered to be a pallative surgery - so to them the fact that she went 5 weeks seizure free was fantastic. And we consider it fantastic too, but we also consider it a great dissapointment that they have returned with the frequency and severity that they have. She is having on average 5-15 per day and they seem to be presenting on the left side of her body. Dr. Kim agreed that that was too many seizures and that our #1 goal is still to stop all regular seizure activity.
After reviewing the EEG she found the left side of Camilla's brain to be clear!!!! That was fantastic news - in the past Camilla's seizures were so generalized that no focal point could be found on either side of the brain and once they did start they would rapidly spread to all points on both sides. She noted that the right side still has a considerable amount of activity and that is def where the seizures are coming from and why they are presenting on the left side of her body.
The next steps - Dr. Kim adjusted her current medications and we will continue to monitor her seizures for the next two months. After that time we will see Dr. Kim again and unless seizures have ceased we will schedule a time for Camilla to return for a week-long hospital stay in which she would undergo EXTENSIVE testing to see if they can find a focal point on the right hemisphere. If they are able to do so we would then consider ressective surgery - in which they would go in and actually remove the parts where seizures originate. This type of surgery is often referred to as a 'grid surgery' and is MUCH MORE involved and serious than her recent corpus callosotomy. I'm still a little in shock over the fact that we might have to consider another surgery but Dr. Kim told us not to be afraid of another surgery and that we are 'chasing' the seizures. If they are unable to find a focal point during the testing then we will continue to unsuccessfully control her seizures with her VNS and medication. I'm just a little numb from all this news...
We covet your prayers right now - we need them right now - I don't even know specifics to ask for you to pray about yet - we really are just numb and in shock -
I do want to thank all of you who continue to reach out to us in various ways - it is really amazing how you guys seem to show up with meals, cards or words of encouragement at just the right times. We are forever grateful for all of you who have prayed us through these moments of difficulty and weakness. YOU ARE APPRECIATED!
Apparently, God isn't finished with us yet...
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11
Sunday, July 10, 2011
tests, tests & more tests
Tomorrow we will head back to Children's again for Camilla's first post-op EEG. This test (for those unfamiliar) measures her brain activity and should give us much insight into what is going on in that pretty little head. We are still seeing seizures everyday and they seem to be slightly increasing in severity and frequency with each passing day. This test should tell us the number of seizures she's having on average each day (seen & unseen), how severe they actually are and what parts of the brain they are originating in. Please pray for safe travel and a positive direction based on the test results also that we get finished quick because we are headed to Alabama Adventure afterwards! Camilla can finally get that head wet!
Our last visit to Dr. Blount was a good one. Her incision looked much better and he said we were all clear - he didn't even schedule a follow-up. I'm kinda going to miss him (at least for a little while)- he's one of the few specialists that doesn't treat you like a patient - he realizes he's dealing with your whole world and he acts likes it!!!
We do continue to see small changes in Camilla: she tells most everyone 'hi' and 'bye' when we meet or leave people and sometimes even over the phone - she is attempting some new words - she will stick her tongue out if you ask her to - her appetite is much less than before surgery - hyperactivity continues to improve each day - she is still sleeping through the night - 'potty' issues and bedwetting are slowly improving - she LOVES books now and isn't quite as destructive to them - she is grinding her teeth again:( - she has developed the horrible habit of biting the skin on her fingertips - she is making strides in assisting with dressing herself - the other night after taking her medicine she went and laid in her bed and fell asleep (this has never happened - we always have to hold her to keep her still long enough for her to get tired and then we carry her to bed) - she still loves to screech LOUDLY and I'm sure there are many more things I could list but those are the highlights for now - good and bad!
We continue to go to speech twice a week and physical therapy once so we are still very tied up with the traveling we have to do each week. Between these appointments and the trips to Birmingham for docs we are rarely home and it is starting to wear on us all. The kids sleep to 9 or so each day that we are home because they are so exhausted from having to get up early and not get back till late and constantly being on the road - and in a loaner car at that! My car had to have some major repairs and it is going on 5 weeks now that I've had a loaner but on the bright side this little car gets better gas mileage than my SUV and with all the traveling we've been doing it has been easier on the pocketbook :)
I hope to post pics from the waterpark and results from our test in the next day or so - so check back soon. Please continue to pray for Camilla - it is so comforting to know that at times when I'm frustrated or confused and don't know what to pray for her - that others do. Thank you for that! Even though we do have questions we know that God has brought us this far and that he's not going to give up on us now. "For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus." And thank you God for that!
Our last visit to Dr. Blount was a good one. Her incision looked much better and he said we were all clear - he didn't even schedule a follow-up. I'm kinda going to miss him (at least for a little while)- he's one of the few specialists that doesn't treat you like a patient - he realizes he's dealing with your whole world and he acts likes it!!!
We do continue to see small changes in Camilla: she tells most everyone 'hi' and 'bye' when we meet or leave people and sometimes even over the phone - she is attempting some new words - she will stick her tongue out if you ask her to - her appetite is much less than before surgery - hyperactivity continues to improve each day - she is still sleeping through the night - 'potty' issues and bedwetting are slowly improving - she LOVES books now and isn't quite as destructive to them - she is grinding her teeth again:( - she has developed the horrible habit of biting the skin on her fingertips - she is making strides in assisting with dressing herself - the other night after taking her medicine she went and laid in her bed and fell asleep (this has never happened - we always have to hold her to keep her still long enough for her to get tired and then we carry her to bed) - she still loves to screech LOUDLY and I'm sure there are many more things I could list but those are the highlights for now - good and bad!
We continue to go to speech twice a week and physical therapy once so we are still very tied up with the traveling we have to do each week. Between these appointments and the trips to Birmingham for docs we are rarely home and it is starting to wear on us all. The kids sleep to 9 or so each day that we are home because they are so exhausted from having to get up early and not get back till late and constantly being on the road - and in a loaner car at that! My car had to have some major repairs and it is going on 5 weeks now that I've had a loaner but on the bright side this little car gets better gas mileage than my SUV and with all the traveling we've been doing it has been easier on the pocketbook :)
I hope to post pics from the waterpark and results from our test in the next day or so - so check back soon. Please continue to pray for Camilla - it is so comforting to know that at times when I'm frustrated or confused and don't know what to pray for her - that others do. Thank you for that! Even though we do have questions we know that God has brought us this far and that he's not going to give up on us now. "For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus." And thank you God for that!
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