Today is Tuesday and we leave early Sunday morning for our week at The Institutes for the Achievement of Human Potential in Philadelphia, PA! I am very excited. This will be our 4th trip to the Institutes and our 3rd trip taking Cate. Since Cate is on the intensive treatment program we are able to go every 6 months for a week. Day 1 is a full day of evaluations for Cate. She will see all of the specialists and they will update her neurological profile. Day 2 and 3 will be a lecture series for Ryan and I. About 20 hours of classroom time learning more information to help our daughter. Day 4 and 5, Cate will join us again at the Institutes and we will learn her new program for the next 6 months. It is a busy week but a great one.
Cate has made some amazing improvements in the last 6 months. I fill out reports every 3 months to send to the Institutes and it is a great time to reflect on how far she has come. For example, 3 months ago Cate crawled an average of 10 feet each day. Now she is crawling an average of 115 feet each day! Now that she no longer uses her inclined floor she will have time for different exercises. Let’s see what her day will look like after our trip.
Cate loves being at the Institutes! Everyone talks to her like she is an intelligent little girl and she gets a lot of attention. She just eats it up! We get to see some great friends we have made during our trips. So as stressful as it might be getting prepared and traveling it will be a wonderful, fulfilling week.
We also get to pick up Cate’s respiratory patterning machine when we are there. It has been delivered and is ready for us to pick it up!
Charlie and Cate playing
Cate and Charlie have been doing well since my last post. Cate has been crawling on the floor so well that we were able to take out one of her therapy tools during the day, the inclined floor. She crawls on the flat floor an average of 150 feet throughout the day! It was only a couple of months ago that we were ecstatic that she crawled 12 inches. I was finally able to get a video of her crawling in her bed during story time last night. Her bed has 2 walls to help her but she also crawls well on the open floor. One of the most difficult things is to figure out what motivates her in each situation. She works incredibly hard for each inch. She is now trying to bring her knees under herself. I am very excited to see what the IAHP will have us do with her when we go there in September for her evaluation. Wow, I am just amazed by her progress.
Charlie also started gymnastics class! All I can say is that she is a vocal, independent girl. She wants to do what she wants and when she wants. There is no follow the leader in her!
She had said it before about 3 weeks ago but now she is saying “HI” multiple times each day and waving her hand! This is a big accomplishment for many reasons. She can hear well enough to mimic us, puts her thoughts together to say the word when we do, visually see us wave, and then add in the motor skills it takes to wave her hand. We are so proud of her! I have tried to get a good picture or video but no luck so far. Here is the best that I could do.
It is these small yet big accomplishments that keep me going with her intense therapy and gives us all the hope that she will continue to improve and catch up with her peers. Praise God!
A big thank you to all that have supported our fundraiser!! We ordered the respiratory machine. Now we have until September when we go to Philadelphia to raise the rest.
I want to start by saying Cate has been seizure free for 1 week!
I started to look back at some pictures of when the girls were born. Now that they are 2 and “big” it seems like so long ago that we were in the NICU at the local children’s hospital. Friday the girls had their 24 month check up at the pediatricians office. Cate is 24 lbs 11 oz and Charlie is 21 lbs 11 oz. They have stayed 2 to 3 pounds apart since they were born.
Enjoy the cuteness!
Charlie – 4 days old
Cate, mom and dad – 5 days old
The day she was extubated!
Charlie and dad – 5 days old
Cate – 6 days old
Lewis family – 6 days old
The first day they met out in the world!
Cate and Charlie – 6 days old
Charlie is wearing Ryan’s wedding ring.
Charlie came home when she was 8 weeks old and Cate came home when she was 10 weeks old.
During our last trip to the IAHP in Philadelphia we met another family with a son the same age as Cate and Charlie. Their story is amazing. Her boys were born at 23 weeks gestation! Jacob is in the intensive treatment program at IAHP so we have a lot in common. Although Jennifer and her family live on the other side of the country we are able to help and support one another. I am very grateful for Jennifer’s support and am very proud of her and her family. She has decided to share her story publicly as well. If you are able to follow her page you will learn even more about the program and how to help children learn and grow.
Please visit their page: defyingthediagnosis.com.
Cate having a good day!
Over $2,500 raised so far! I am astonished at everyone’s generosity. Thank you, thank you, thank you! I keep talking about the respiratory patterning machine and I am guessing most of you are wondering what it is! Now remember I am not a medical professional but I will do my best to explain Cate’s oxygen enrichment program given to us by the IAHP. If you want to learn more please read the book “What to do About Your Brain Injured Child” by Glen Doman. It is a great book for everyone to read.
Brain injury is caused with there is a lack of oxygen to the brain. Oxygen is good for the brain and when it doesn’t get enough bad things can happen such as seizures. Seizures are a symptom of lack of oxygen to the brain. For most people with a brain injury breathing can be hard. Not only breathing deep but breathing in a regular pattern that we all take for granted. My husband says it is like teaching yourself to breath when you are running hard or swimming laps. You have to think about it. Imagine having to think about your breathing all day long and trying to function. This is what Cate is going through. Not only does it make it hard for her to be physical, eat, and talk, but she is also unable to get the amount of oxygen to her brain that she needs. This can cause symptoms such as tightness in her muscles, immobility, vision problems, and slow down her improvement.
The IAHP (www.iahp.org) has done years of research and studies on this subject and they have found great success with masking and respiratory patterning. They have asked that I do not share any pictures of Cate using this equipment because it can be dangerous if not done properly under the right supervision. So I will do my best to explain. The masking is the first thing we did with the program and is a big contributor to her daily seizures stopping. We use a small plastic bag with a small hole in the end and place this over her nose and mouth. She re-breathes her own CO2. For her program we do this for 45 seconds, every 5 minutes, at least 35 times each day. Her CO2 levels increase which tells her brain to send more blood (oxygen) to the brain and she breathes very deep to increase her lung capacity. The net effect after removing the mask is increased blood flow and increased oxygen to her brain. It is why breathing into a paper bag when having an anxiety attack helps. We just do it with a lot of frequency. When we first started and on a regular basis we use an pulse oximeter to measure her oxygen level to make sure it does not go low. She handles it well and we make a game out of it.
The respiratory patterning is the next step that helps her breathing. It is a way to train her brain how to use a consistent breathing pattern, similar to an iron lung. Currently we use a fabric vest that we can pull to tighten. Two people pull and release to a metronome set at her breathing rate. Pull -1..2.. Release-1 Pull-1..2.. Release 1, etc. We do this to compress and release her chest so she breathes at a consistent rate. Ryan and I were able to try this ourselves when we were in Philadelphia this spring and it was pretty crazy. It was like you ran 1/4 mile but you were not tired or out of breath, just breathing deep. It feels good. We are only able to do this for up to 1 hour each day because we do not have enough time with the rest of her program. The machine that we are now able to purchase (thank you to the generous donors!!) will pneumatically compress her vest at the proper rate. She will be able to wear it all night and during naps. That means instead of 1 hour each day of being patterned she will get 12+ hours! Think of the amount of oxygen her brain will be able to get. Hopefully this will help with her overall improvement and reduce her seizures.
Thank you again! And please keep sharing.
$2,050 raised already!! I can’t believe how generous everyone is. It means more to us than you will ever know. Thank you to everyone who has supported and shared the site. Please keep it going. http://www.gofundme.com/by067c
Charlie and Cate enjoying some of their new birthday presents.
Cate had another good night. No further seizure activity. Her and Charlie are sleeping soundly. I am not since I get up every hour or so to check on her. Hopefully that will get better as each day goes by. She is almost back to acting like herself. She did a lot of crawling today and yelled at me when I wasn’t giving her enough attention. As much as we try to be tough she does run the house! At least we stays busy with her therapy most of the time.
I wanted to spend some time talking and thanking Cate’s medical team. I have learned a lot since the girls were born and spent 10 weeks in the NICU. The more you educate yourself and ask questions I believe the better care you or your child will get. It took some time but Cate has a wonderful medical support team. I can’t thank them enough. Working with the Institutes for the Achievement of Human Potential (IAHP) has made the most change but the rest of the team here at home have been incredibly supportive. The pediatrician has listened to our concerns, works with us on vaccines, and communicates with her specialists and the IAHP to keep everything together. Cate’s neurologist thought I was crazy when I told him no more seizure medication and we would be doing an intense home program including masking her every 5 minutes during the day. But he went along for the ride and is very pleased with her progress. He has continued to listen and support Cate’s overall health. Her neurosurgeon hasn’t been as involved (a good thing) but he too has supported and asked a lot of questions. Cate also has an occupational therapist that comes to the house and helps her with eating and positioning. The OT has worked with us and has helped to enhance her program.
Being at the hospital this weekend and seeing new doctors has only made me appreciate Cate’s regular doctors even more. We got looks of surprise, frustration and indifference by the doctors on call when we shared Cate’s medical plan. As her neurologist put it Monday morning, you are in the minority. All I can say is that she is continuing to get better and surprise all of the medical professionals. Thank you to the doctors and staff at IAHP! They have given us the tools and explanations to do the best we can for Cate.
It is very difficult to ask for help but it is no longer about us, it is about our daughter. Cate and Charlie just celebrated their 2nd birthday! Unfortunately the day after their party Cate had a bad seizure. She was taken by ambulance to the emergency room and we spent the night in the hospital. We just got home yesterday (their actual birthday). Cate is doing well right now. Cate has been seizure free for 5 months. It could have been worse but it isn’t good. There is a machine that we need to purchase to help with her breathing and have not been able to do so yet. We are hoping with the fundraiser we can cover our costs to go to the IAHP in September and help with the respiratory patterning machine. Hopefully this machine will add another defense against the seizures and improve her progress. Cate has been making some great progress, she is now crawling over 100 feet each day on the flat floor!
Here is the link to the fundraising site. Any support is very much appreciated!
The birthday party was a hit! It was a backyard beach party. Here are some pictures.
First of all I want to apologize for taking so long to write a new entry into the blog. Overall things have gone well. Cate had a few weeks where she was not herself. I believe she was fighting off some virus or infection. She had a few symptoms but nothing to go to the doctor over. She was just fussy and did not tolerate her daily program very well. Cate seems to be feeling much better and is off to the races again! Charlie is doing awesome. Definitely a 2 year old!
Last week was our half way mark between visits to The Institutes for the Achievement of Human Potential (www.iahp.org). We take Cate every 6 months for a visit. At the halfway point (3 months after the last visit) we send in her interim report and video. The staff at the IAHP review and send their feedback. The video here shows you the physical part of Cate’s program that we do daily.
Please feel free to ask questions in the comment section or send me an email. I will do my best to keep updating the blog. There is so much more I want to share!
After the girls started to feel better last week I got sick! Of course. A high fever, sore throat, etc. It took me a few days to get my energy back but now we are going strong. Ryan and I both celebrate our birthdays this week. Wow, how life has changed in the last few years when it comes to celebrating our life events. I am sure this is not unusual as you get older and your family grows. I will say that my husband and friends outdid themselves this year and I had a wonderful birthday celebration for the big 30! Thank you!
Cate has been doing great with her crawling, IAHP program, and her attitude in general. I know it helps that the girls have been able to go outside now that the weather is nice. Cate is crawling 6 feet down the inclined floor in 10 seconds or less about 30 times each day, crawling on the flat (level) floor 1-2 feet about 10 times each day and crawling in the evening and night. That is a total of 340 feet of crawling each day! We are so proud of Cate, she works very hard for every inch.
Dad and his girls enjoying the Ohio river and the ducks.
Charlie admiring the ducks on the Ohio river.