Last night was in no other words, horrible. Roa went down at 8:30 was up by 10:10, up again at 11:30, up again from 2:30 until 3:45, then up at 5:00 until 5:45. Of course, he had to get up for the day on schedule...6:45am! I was very thankful Vickie and Brit were here to take him for the morning couple hours so I could get a solid two hours. I am weak, tired, foggy, depressed, to be quite honest.
At the first session, I had to have them stop the pressurization so I could use the restroom and gather my nerves and have a good cry. The walls of the chamber sure close in on me when I have had no sleep. The staff there is so supportive and encouraging! Roa also was cranky to start off the session... imagine that after such poor sleep. Yet, he didn't sleep in the chamber and didn't nap afterwards. Just continued to fuss all morning.
Luckily, he slept and nursed on and off for the majority of the second round. I too got a few minutes. Right now, Roa is swimming with Vickie and Brit so I can get some rest. Hopefully, posting on the blog will help clear my head so I might be able to sleep a wink.
I was very disappointed this morning with the chiropractic appointment. Roa was fussy, tired and crying, so she didn't attempt to adjust him much. She asked me to stop in after his second round of HBOT, but she wasn't in her office then. Might now just wait for Dr. John to adjust him when we get back to White Bear. Dr. John Mack is the best and Roa responds so well to him.
I talked again briefly to Dr. VanDyke when he check on us this morning. When Bryan comes this week, we will attempt to the the urine collect for futher blood work to see what might be hindering Roa's ability to stay asleep and get a good REM cycle. Until then, my life continues to be foggy..........
Monday, August 31, 2009
Sunday, August 30, 2009
LAST WEEK- Sunday night thoughts
So tomorrow we begin our final week of Hyperbarics. We are very excited to be nearing the end. Bryan left at 7:00 tonight to head back to White Bear for work in the morning. Jen's sister Vickie and niece Brittney are here tonight to help out with the travel to and from the sessions tomorrow... and the sleep session tonight. (fingers are crossed) I can't believe it, but Brit starts school Tuesday! Where did the summer go?
It feels like fall here. After a couple hour visit from Jen's sister Valerie and husband Brian, we took off to the Madison zoo. It was a perfect cool day for active animals. Roa laughed so hard at the prairie dogs and the buffalo. He didn't want to leave the seal exhibit, as they were swimming like mad! He is such an animal lover, just like his mom and pop!
I would like to thank all of you who called Bryan or I and sent warm messages this week during our VERY difficult, trying time. Roa has been pushing us each night. We are desperately trying to figure out how to help him get some sleep, for us as well! Hopefully, the new diet plan avoiding food sensitivity items will help some, paired with melatonin, epsom salts baths, etc. Still trying to piece together the puzzle...
This weekend, we saw some really nice "differences" in Roa. Sitting so upright, open hands, standing tall, lying on his side, better attitude with usual stressors. After this last week's sessions, Bryan and I both said, this was a very difficult experience to deal with, one month away/two therapy sessions a day... but we are so very glad we did this for him and it really was worth every penny!
Off to bed I go, catch some shut eye before the "night shift".
It feels like fall here. After a couple hour visit from Jen's sister Valerie and husband Brian, we took off to the Madison zoo. It was a perfect cool day for active animals. Roa laughed so hard at the prairie dogs and the buffalo. He didn't want to leave the seal exhibit, as they were swimming like mad! He is such an animal lover, just like his mom and pop!
I would like to thank all of you who called Bryan or I and sent warm messages this week during our VERY difficult, trying time. Roa has been pushing us each night. We are desperately trying to figure out how to help him get some sleep, for us as well! Hopefully, the new diet plan avoiding food sensitivity items will help some, paired with melatonin, epsom salts baths, etc. Still trying to piece together the puzzle...
This weekend, we saw some really nice "differences" in Roa. Sitting so upright, open hands, standing tall, lying on his side, better attitude with usual stressors. After this last week's sessions, Bryan and I both said, this was a very difficult experience to deal with, one month away/two therapy sessions a day... but we are so very glad we did this for him and it really was worth every penny!
Off to bed I go, catch some shut eye before the "night shift".
Saturday, August 29, 2009
Day 15- Always look on the bright side of life
We had a great friday evening at the ol' Country Inn, so I didn't get to post last night.
Today, we are looking at a cool day here in Madison. Sweatshirts, leaves turning, cool wind. Can't believe fall is almost here. September 23rd, Roa begins ECFE class with Mom.
We also need to start planning our next Great Expectations Family Support Group meeting.
Yesterdays session were great! Dad and Roa came out of the chamber smiling! Roa took two great naps yesterday, laughed and frolicked in the pool, and joined Mom and Dad at the Ten Pin Bowling Alley next door to the hotel for dinner. Roa has been doing a nice job trying bits and pieces off our plates. Very encouraging... as long as we stay away from wheat, oat, dairy..... Which reminds me, today we must grocery shop for our new food sensitivity diet.
Last night on our family walk, the sidewalks were hopping with frogs! Daddy caught one and showed Roa. He looked puzzled at first. Wide-eyed, confused. Then, he bursted into a full-blown belly laugh! It was truly priceless and a perfect end to our difficult week.
One more week of HBOT to go. We are counting down until we can see Max and Molly, Beast and Coalie. There was a Helping Paws Golden Retriever at the center yesterday. Roa was mesmerized, watching Mozart's every move as the dog paced, waiting for his master to come out of the chamber. Roa got to pet the furry helper and he was happy as a clam! When Mozart left the room, Roa cried. He misses his puppies! And it sounds like they miss us, as Molly has escaped from the backyard on several occasions trying to find us. Homeward Bound, huh, Ellen! :)
Today, we are looking at a cool day here in Madison. Sweatshirts, leaves turning, cool wind. Can't believe fall is almost here. September 23rd, Roa begins ECFE class with Mom.
We also need to start planning our next Great Expectations Family Support Group meeting.
Yesterdays session were great! Dad and Roa came out of the chamber smiling! Roa took two great naps yesterday, laughed and frolicked in the pool, and joined Mom and Dad at the Ten Pin Bowling Alley next door to the hotel for dinner. Roa has been doing a nice job trying bits and pieces off our plates. Very encouraging... as long as we stay away from wheat, oat, dairy..... Which reminds me, today we must grocery shop for our new food sensitivity diet.
Last night on our family walk, the sidewalks were hopping with frogs! Daddy caught one and showed Roa. He looked puzzled at first. Wide-eyed, confused. Then, he bursted into a full-blown belly laugh! It was truly priceless and a perfect end to our difficult week.
One more week of HBOT to go. We are counting down until we can see Max and Molly, Beast and Coalie. There was a Helping Paws Golden Retriever at the center yesterday. Roa was mesmerized, watching Mozart's every move as the dog paced, waiting for his master to come out of the chamber. Roa got to pet the furry helper and he was happy as a clam! When Mozart left the room, Roa cried. He misses his puppies! And it sounds like they miss us, as Molly has escaped from the backyard on several occasions trying to find us. Homeward Bound, huh, Ellen! :)
Thursday, August 27, 2009
Day 14- Food Allergy test results
The results are in from the intense food allergy testing done on Roa and I. The results are suprising, hopeful, and troubling all at the same time. Roa shows high allergic sensitivity to oats, cheese, milk, yogurt, peanut, kidney bean, and aspergillus niger(a mold found on grapes, onions, and peanuts). He shows moderate sensitivity to wheat, corn, orange, and soy bean. With these results, Dr. Van Dyke recommended we cut these things from our diet. He also suggested we cut the items listed on low allergen including baker's yeast, gluten, beef, pork, and banana to see how Roa responds and then we could possibly add things back after some time. Wow! The Thayer's diet is greatly changing! Fruits, vegetables, rice, chicken and fish will be the staples.
We don't know how these dietary changes will alter Roa's CP, but won't it be interesting to find out what he will be like when he is feeling better? It should also be noted that these type of allergies usually run in families. Allergic responses to foods that go undetected over years can result in symptoms of depression, anxiety, irritable bowel, insomnia, parkinson's disease, etc... sounds a bit familiar to the Kriesel family tree. Physical symptoms noted are skin issues, dark circle under the eyes, diaper rash,... things our Roa has shown.
The other step we are now looking into is to complete the next food allergy panel that looks at the next series of most common foods (88 to be exact) that might cause issue. We also are looking into a urine screen to determine levels of hormones that could be affecting his sleep.
We don't know how these dietary changes will alter Roa's CP, but won't it be interesting to find out what he will be like when he is feeling better? It should also be noted that these type of allergies usually run in families. Allergic responses to foods that go undetected over years can result in symptoms of depression, anxiety, irritable bowel, insomnia, parkinson's disease, etc... sounds a bit familiar to the Kriesel family tree. Physical symptoms noted are skin issues, dark circle under the eyes, diaper rash,... things our Roa has shown.
The other step we are now looking into is to complete the next food allergy panel that looks at the next series of most common foods (88 to be exact) that might cause issue. We also are looking into a urine screen to determine levels of hormones that could be affecting his sleep.
Day 14- Open thoughts and ramblings of a tired soul
As I sat today in the waiting room of the center, I watched the interactions of an 18 month old little guy and his parent. Ironic after my post this early morning. He is, also, there in the waiting room as his older siblings get treatment. I watch him waddle around, bending, stooping to pick up a ball...with both hands, with ease. He carries it over to his father and utters, "dadada?" questioningly. His dad , totally engrossed in his paperback, ignores his son's attempts at play. I'm sure not on any conscience level, but yet the toddler wonders off to explore another area of the playroom and the father continues to enjoy his "alone time", as all parents need and enjoy.
I sat there, screaming inside. PLAY with your son. Celebrate his ability to control his hands, feet, body! Bask in the glory of his new found skill! Jump up and down and let him know, "Baby Boy, you are an exceptional little creature and YOU want to interact with ME! What a honor for me to be your parent!"
A little over the top, I've always been a bit dramatic, but that is my true feelings during my observation of the two. Did I tell the father this? No. Of course not. Socially unacceptable.
Anytime, in the last 10 years or so that I have been asked my favorite quote, it has been Tennesse Williams, "Life is all just memories except for this one single moment that goes by so fast you can hardly catch it going." Wow, has that quote proven to be outstanding in my life. We all move through life wanting THINGS, wanting our loved ones to have THINGS, wanting our children to be above the norm so that they can prosper and have many THINGS. But, do we take the time to celebrate the moments that they demonstrate something tiny yet, spectacular! I have learned that we have to watch Roa's every move every minute of every day, so that I can celebrate all the little things that show he is gaining strength, reaches for and manipulates an object after patient trial after trial, communicate his desire and interest to us with a determined gaze or gesture. Take the time, people! Celebrate THIS moment right now!
I'm now off the soapbox. I'm not losing it, don't worry... only seeing a bit more clearly and wanting to share my innermost thoughts. Initially, I wanted to start a blog as a sort of diary and a way to share will all instead of the basic emails and phone conversations. Thanks for listening, hope it makes you think a little.
Roa is tired this morning and a bit cranky. The HBOT was long for him and Daddy today. He is sleeping now after a long 1/2 hour attempt to get him down for the nap. I tried our usual nursing to sleep but his eyes kept popping open or he would startle awake. He didn't want to stop nursing as he has grown to use it as a soother. Bryan got him to sleep by walking and holding him tight.
I chatted in length with the chiropractor who also works with the HBOT team. We are going to have Roa adjusted this afternoon as it has been 3 weeks since his last adjustment and it usually helps him to sleep. We pray that this gives him some relief.
I sat there, screaming inside. PLAY with your son. Celebrate his ability to control his hands, feet, body! Bask in the glory of his new found skill! Jump up and down and let him know, "Baby Boy, you are an exceptional little creature and YOU want to interact with ME! What a honor for me to be your parent!"
A little over the top, I've always been a bit dramatic, but that is my true feelings during my observation of the two. Did I tell the father this? No. Of course not. Socially unacceptable.
Anytime, in the last 10 years or so that I have been asked my favorite quote, it has been Tennesse Williams, "Life is all just memories except for this one single moment that goes by so fast you can hardly catch it going." Wow, has that quote proven to be outstanding in my life. We all move through life wanting THINGS, wanting our loved ones to have THINGS, wanting our children to be above the norm so that they can prosper and have many THINGS. But, do we take the time to celebrate the moments that they demonstrate something tiny yet, spectacular! I have learned that we have to watch Roa's every move every minute of every day, so that I can celebrate all the little things that show he is gaining strength, reaches for and manipulates an object after patient trial after trial, communicate his desire and interest to us with a determined gaze or gesture. Take the time, people! Celebrate THIS moment right now!
I'm now off the soapbox. I'm not losing it, don't worry... only seeing a bit more clearly and wanting to share my innermost thoughts. Initially, I wanted to start a blog as a sort of diary and a way to share will all instead of the basic emails and phone conversations. Thanks for listening, hope it makes you think a little.
Roa is tired this morning and a bit cranky. The HBOT was long for him and Daddy today. He is sleeping now after a long 1/2 hour attempt to get him down for the nap. I tried our usual nursing to sleep but his eyes kept popping open or he would startle awake. He didn't want to stop nursing as he has grown to use it as a soother. Bryan got him to sleep by walking and holding him tight.
I chatted in length with the chiropractor who also works with the HBOT team. We are going to have Roa adjusted this afternoon as it has been 3 weeks since his last adjustment and it usually helps him to sleep. We pray that this gives him some relief.
4:39 am - Day 14 - Reality post
It is the wee hours of morning. I have just listened to my baby scream, cry and fuss for over an hour. Up twice tonight with fussing. It is a reality that Bryan and I live.. night after night for 14 months. I do not get a break, I can not run away, I am here and 24/7 -Roa needs me. I write on this blog daily, trying to keep up my spirits and journal with a positive attitude. People don't want to know the gory details. They just want the big picture and to be informed of all that we are trying, the changes we are seeing. But tonight, like every night, I was slapped with the reality that my baby is not like other babies. My baby can not sleep because something in his brain doesn't let him. My husband and I go through life in a foggy reality-tired, drained and asking "why OUR baby?"
We watch other babies in awe- "look at her head control", "he can reach and grasp that toy WHILE he sits", "look at how relaxed his legs are". I taught early childhood special needs for 12 years and I NEVER looked at a child the way I do now. I have my master's degree with a focus on learning through play.... and I have a baby who CAN NOT play. Can not hold a toy and manipulate it, can not sit independently to interact with me. That is my life, day in and out. Waiting, praying , hoping that Roa will SLEEP, that his brain can let his body relax so that new connections can be made and he can learn to have fun and play like all the babies I see around me. People are quick to give advice- to say that all babies sleep poorly sometimes,... maybe it's a milestone coming, maybe it is behavioral and we should let him cry it out, maybe there is a medication we should try, maybe it's teething, maybe it is a muscle spasm tonight. ... The fact is, we don't know and we continue to struggle each night and pray that tomorrow night the melatonin will help or the HBOT will work like it seems to for others or his bath will relax him, or a massage will help.... We will listen to the screams, the crying, the pain he feels... and we will feel it too.
We watch other babies in awe- "look at her head control", "he can reach and grasp that toy WHILE he sits", "look at how relaxed his legs are". I taught early childhood special needs for 12 years and I NEVER looked at a child the way I do now. I have my master's degree with a focus on learning through play.... and I have a baby who CAN NOT play. Can not hold a toy and manipulate it, can not sit independently to interact with me. That is my life, day in and out. Waiting, praying , hoping that Roa will SLEEP, that his brain can let his body relax so that new connections can be made and he can learn to have fun and play like all the babies I see around me. People are quick to give advice- to say that all babies sleep poorly sometimes,... maybe it's a milestone coming, maybe it is behavioral and we should let him cry it out, maybe there is a medication we should try, maybe it's teething, maybe it is a muscle spasm tonight. ... The fact is, we don't know and we continue to struggle each night and pray that tomorrow night the melatonin will help or the HBOT will work like it seems to for others or his bath will relax him, or a massage will help.... We will listen to the screams, the crying, the pain he feels... and we will feel it too.
Wednesday, August 26, 2009
Day 13 - New foods, old sleep issues
We had a mixed night last night. Roa fell asleep at 8:45 pm, stirred a little at 10:15, then slept until 2:30 am. He then cried for the next two hours because he was tired but refused to go to sleep. He finally slept for two more hours and was up for good at 6:30 am. Jen got up and took him down the hall so I could sleep in another hour. By his first therapy session, he was tired and fussy and that held through for the entire hour. Frustrating!
He has not been eating a lot of his own food the past couple of days and is really interested in the food we are eating. We are starting to give him small pieces of our food and he has been handling it pretty well. Previously, he had difficulty manipulating foods inside his mouth and would attempt to swallow chunks that were to large which would lead to gagging and choking. Now he is moving the food around his mouth with his tongue and chewing it completely before swallowing it. That is an exciting improvement.
The afternoon session went a lot better. Roa was not fussy and was content to watch a movie during the session. After the session, we played at the center for a bit before coming home for his nap. Roa likes pushing a shopping cart around the center and watching the other kids on the move. Hopefully, he is learning from them and getting motivated!
This evening, our cousin Jini is coming over to swim with us! Another exciting evening at the Country Inn!
He has not been eating a lot of his own food the past couple of days and is really interested in the food we are eating. We are starting to give him small pieces of our food and he has been handling it pretty well. Previously, he had difficulty manipulating foods inside his mouth and would attempt to swallow chunks that were to large which would lead to gagging and choking. Now he is moving the food around his mouth with his tongue and chewing it completely before swallowing it. That is an exciting improvement.
The afternoon session went a lot better. Roa was not fussy and was content to watch a movie during the session. After the session, we played at the center for a bit before coming home for his nap. Roa likes pushing a shopping cart around the center and watching the other kids on the move. Hopefully, he is learning from them and getting motivated!
This evening, our cousin Jini is coming over to swim with us! Another exciting evening at the Country Inn!
Subscribe to:
Posts (Atom)
Mom and Me
