We had a great Christmas in Minnesota with Mark's family. Unfortunately though, Charlie does not travel very well. We drove into the night on the way down there so the kids would sleep, so we thought. When we pulled into Mark's parent's driveway at 3am, Charlie was singing "Jingle Bells" and he hadn't slept a wink. It was a long night :) On the way home we decided to sleep in a hotel to break the trip up into two days. On the second day we were 12 miles down the road when Charlie started yelling "Stuck! Stuck!". He doesn't like to be stuck in his carseat. Oh well, we survived the driving, and it was worth it.
We arrived in MN on Thursday morning. After a few hours of sleep, we fed the kids and then headed to Sioux Falls, SD where we got to spend a little time with my Grandma and we saw Mark's brother's new office. Then, we went out to eat with Mark's whole family. Charlie was exhausted by this point, but he was a trooper. Thankfully I had Curious George and a portable DVD player for the restaurant :) Ruby was really good, but she had slept much better than Charlie the night before.
Friday, I enjoyed down time at Mark's parent's house. All the guys went bowling in the afternoon; I was invited, but laying around sounded much better. Friday evening we ate appetizers and plenty of snacks. Then we opened presents together. It was wonderful chaos, especially having three two year old boys running around! Charlie split his lip open right in the middle of the stocking stuffers, but once the blood was cleaned up he recovered pretty fast when he realized he got to open presents. Mark's parents were once again very generous with the gifts; the kids had a great time opening all their new toys and we came home with a lot of fun stuff.
Saturday morning we all went to church together. It was a blessing singing Christmas carols with all of Mark's family sitting next to us in the row. After a great lunch, we let the kids nap and then we headed to Mark's grandma's house for the annual Douma Christmas celebration. There we enjoyed homeade soup and pig 'n the blankets plus plenty of sweets. Grandma gave everyone ornaments for the tree and she made Charlie a sock monkey; it is adorable and he loves it. We had a great time catching up with aunts, uncles and cousins.
Sunday we had a very quiet day. Charlie and Ruby (and their parents :) were exhausted from all the activities we lounged around, ate, took naps, and played games...it was wonderful.
Monday I did a little shopping with Mark's mom while Mark did some packing. Then we ate Taco Johns (love it!) for lunch, packed up and took off around 3pm for MI. After a couple of hours, we stopped at the Amish Oven for supper. Thankfully we were the only people in the restaurant because Ruby was crying and Charlie kept trying to run into the kitchen and he wanted to grab the baked goods off the front display case. The servers there were very gracious to us :) We made it to the hotel a few hours later, and by about 9pm we were all sleeping.
Tuesday we finally made it home. We had a fabulous time with family. The weekend reminded me of how blessed we are!
Dad and Mom TH- thanks for your hospitality! It was a lot of fun to spend a long weekend with everyone!
Pictures soon....I know I keep saying that, but I will download them eventually :)
Wednesday, December 29, 2010
Tuesday, December 14, 2010
A Post....Finally!
Blogging has gotten away from me the past few weeks. We have been staying plenty busy this December, but we are all doing well!
A few random updates......
-Charlie had his ear tubes redone on one side a week or so ago. He did really well and bounced back right away. I am relieved to be done with the runny nose and antibiotics for now.
-Ruby's oral thrush infection finally cleared up and now we have our old Ruby back. She has been very content and happy lately. She even slept through the night last night! (I hardly dare post that because I am afraid I will jinx something :) Since she feels better her sleep at night has been much better. We stopped giving her sleeping meds and now we are just giving her melatonin (a natural sleeping supplement) to help her sleep. So far is seems to be working well.
-We continue to work hard on ABR exercises with Ruby. Now that we aren't giving her sleeping meds, we can't do any exercises with her at night. This is nice because Mark and I actually have a little time together when the kids go to bed now, but we are finding it hard to get three hours of therapy in without doing any at night. Right now we are averaging about 2 hours a day. We keep doing our best to give her the therapy she needs while enjoying the rest of life also. The balance is tricky sometimes.
-We are looking forward to a trip to MN over Christmas break. It will be a lot of fun to catch up with Mark's family and relax. We always eat a lot, play several games and laugh hard....should be a great time.
I will try to post pictures soon. Hope you all are having a blessed Christmas season!
A few random updates......
-Charlie had his ear tubes redone on one side a week or so ago. He did really well and bounced back right away. I am relieved to be done with the runny nose and antibiotics for now.
-Ruby's oral thrush infection finally cleared up and now we have our old Ruby back. She has been very content and happy lately. She even slept through the night last night! (I hardly dare post that because I am afraid I will jinx something :) Since she feels better her sleep at night has been much better. We stopped giving her sleeping meds and now we are just giving her melatonin (a natural sleeping supplement) to help her sleep. So far is seems to be working well.
-We continue to work hard on ABR exercises with Ruby. Now that we aren't giving her sleeping meds, we can't do any exercises with her at night. This is nice because Mark and I actually have a little time together when the kids go to bed now, but we are finding it hard to get three hours of therapy in without doing any at night. Right now we are averaging about 2 hours a day. We keep doing our best to give her the therapy she needs while enjoying the rest of life also. The balance is tricky sometimes.
-We are looking forward to a trip to MN over Christmas break. It will be a lot of fun to catch up with Mark's family and relax. We always eat a lot, play several games and laugh hard....should be a great time.
I will try to post pictures soon. Hope you all are having a blessed Christmas season!
Saturday, November 27, 2010
A Weekend to Be Thankful For
I was really looking forward to this holiday weekend. Mark was going to be home from work for a couple of days, we had plans to eat a great Thanksgiving meal at my parents house (Mark cooked the turkey again this year :) and then we were going to play games at night with everyone....I was excited to take a break from therapy to have fun with my family.
Well... as usual, things did not go exactly as planned. Wednesday night Ruby screamed for a few hours; I had such a difficult time getting her to sleep and keeping her asleep. Since we didn't sleep much Wed night, we were tired Thursday morning and late for church. I had to walk out of church with Ruby because she was so fussy (this has never happened before--usually as long as we can cuddle her she is content). Even with a fussy daughter, we did end up making it to my parents house with a turkey for a Thanksgiving feast. I tried to lay Ruby down several times while we were there, but even though she was tired, she wouldn't nap. She also didn't want to eat, suck on her pacifier, or drink her bottle...things that usually calm her. We fought her fussiness off and on all day Thursday. She was passed around between parents and grandparents, but she still wouldn't calm down. I was so frustrated with her because I felt she was ruining our Thanksgiving and as far as I could tell nothing was wrong.
In the evening, my mom was trying to help me calm her down when she realized that Ruby had some white bumps in her mouth. Then we realized she had what looked like oral thrush...painful sores in her mouth, on her tongue and down her throat. I felt really bad for being frustrated with her, but I was so thankful that there was a reason she was being so terrible. We called the on call doctor and got a prescription right away. Even with meds in her, we had to leave my parents early because she was screaming and I couldn't get her calmed down.
It has been a long few days and nights at home, but thankfully I think Ruby is feeling a little better tonight. I finally got some smiles and kicks from her and she was much more content. Hopefully the worst is over and the meds will kick this infection.
Mark and the boys from my family went to the Penn State vs MSU game today at Penn State (go MSU!) Mark wasn't going to go because of how Ruby was, but I told him he should still go. My Mom came over and hung out with me and the kids all day and then my nieces joined us late in the afternoon. I was kind of dreading sitting around with a sick kid again all day, but the day actually was fun. We watched the game while Ruby sat by us calmly and Charlie slept. Then, tonight, the cousins had fun together eating Grandma's grilled cheese, playing ring around the rosie, watching Curious George's Christmas and then all taking a bath together and running around in their diapers :) Good times.
So, my weekend was not at all what I had planned, but it was still good. I was reminded again of how thankful I am for family and even though we were couped up in our house all weekend, we were still together and that is a blessing. God is good, all the time.
Happy Thanksgiving Weekend!
A few shots from the past week.....
Mark's pomegranate molasses turkey; it was DELICIOUS! I was very proud of him and I think he needs to do the cooking more often.
My cuddlebugs this morning; I was so tired I tried to have them both in my bed for a little more sleep....yeah, that lasted about two minutes. But, it makes for a cute picture as least.
Charlie loves reading books
and he loves to color on his new art easel from IKEA.
Lately Charlie likes to try to get into Tiger's kennel and everytime he realizes he can't fit so he yells, "stuck Mommy!" Then, a few minutes later, he tries again. I am not sure if I understand his logic.....it is crazy what little boys think is fun :)
Well... as usual, things did not go exactly as planned. Wednesday night Ruby screamed for a few hours; I had such a difficult time getting her to sleep and keeping her asleep. Since we didn't sleep much Wed night, we were tired Thursday morning and late for church. I had to walk out of church with Ruby because she was so fussy (this has never happened before--usually as long as we can cuddle her she is content). Even with a fussy daughter, we did end up making it to my parents house with a turkey for a Thanksgiving feast. I tried to lay Ruby down several times while we were there, but even though she was tired, she wouldn't nap. She also didn't want to eat, suck on her pacifier, or drink her bottle...things that usually calm her. We fought her fussiness off and on all day Thursday. She was passed around between parents and grandparents, but she still wouldn't calm down. I was so frustrated with her because I felt she was ruining our Thanksgiving and as far as I could tell nothing was wrong.
In the evening, my mom was trying to help me calm her down when she realized that Ruby had some white bumps in her mouth. Then we realized she had what looked like oral thrush...painful sores in her mouth, on her tongue and down her throat. I felt really bad for being frustrated with her, but I was so thankful that there was a reason she was being so terrible. We called the on call doctor and got a prescription right away. Even with meds in her, we had to leave my parents early because she was screaming and I couldn't get her calmed down.
It has been a long few days and nights at home, but thankfully I think Ruby is feeling a little better tonight. I finally got some smiles and kicks from her and she was much more content. Hopefully the worst is over and the meds will kick this infection.
Mark and the boys from my family went to the Penn State vs MSU game today at Penn State (go MSU!) Mark wasn't going to go because of how Ruby was, but I told him he should still go. My Mom came over and hung out with me and the kids all day and then my nieces joined us late in the afternoon. I was kind of dreading sitting around with a sick kid again all day, but the day actually was fun. We watched the game while Ruby sat by us calmly and Charlie slept. Then, tonight, the cousins had fun together eating Grandma's grilled cheese, playing ring around the rosie, watching Curious George's Christmas and then all taking a bath together and running around in their diapers :) Good times.
So, my weekend was not at all what I had planned, but it was still good. I was reminded again of how thankful I am for family and even though we were couped up in our house all weekend, we were still together and that is a blessing. God is good, all the time.
Happy Thanksgiving Weekend!
A few shots from the past week.....
Mark's pomegranate molasses turkey; it was DELICIOUS! I was very proud of him and I think he needs to do the cooking more often.
My cuddlebugs this morning; I was so tired I tried to have them both in my bed for a little more sleep....yeah, that lasted about two minutes. But, it makes for a cute picture as least.
Charlie loves reading books
and he loves to color on his new art easel from IKEA.
Lately Charlie likes to try to get into Tiger's kennel and everytime he realizes he can't fit so he yells, "stuck Mommy!" Then, a few minutes later, he tries again. I am not sure if I understand his logic.....it is crazy what little boys think is fun :)
Friday, November 19, 2010
Hands
Lately, Ruby has been using her hands a lot more. Over the last couple of months we have been doing ABR exercises on her shoulders and shoulder blades. These parts of her body are starting to normalize and as a result her hands have been more open and she has been able to move her arms, hands, and fingers much more intentionally. For a long time her hands were pretty locked into a fist most of the time. Lately, she has been opening her fingers when she feels a toy, trying to put her hand on her bottle and opening her hands to touch the spoon when we are feeding her. This actually makes feeding more of a mess, but we are thrilled that she is trying to help us get food into her mouth!! She can even pull her pacifier out of her mouth (I can't wait until she can learn to put it back in, especially at 3am :)
Here are a few photos of Ruby and her hands.....
She is getting her hands into her mouth all the time. She used to only be able to suck on her fist, but now she gets individual fingers in her mouth. This picture looks like she is just chewing on her whole fist, but I liked her pigtails so I want to post it anyways :)
She is much better at holding onto toys than she used to be.
Yesterday she was sitting in her chair, playing with a toy! She intentionally opened her fingers over and over again to touch this toy. It is such an improvement to see her recognize that she has a toy on her lap and then try to touch it, grab it and put it in her mouth. Go Ruby!!
Also-isn't her hair cute? I can't take the credit because Emily, Ruby's fantastic babysitter, did her hair. I think she looks grown up with these braids in.
Thursday, November 18, 2010
Random Happenings
Wow! I can't believe it has been so long between posts; I guess we have been staying pretty busy over here and the blog has slipped my mind.
A few random happenings from the last week....
-We visited Ruby's school (the Ottawa Area Center) last Friday. It is a fabulous place and it will be a great fit for Ruby's needs. The want her to start after spring break already. She won't even be three then so it will be hard to send her off to school already that young, but I think she will love it once she adjusts. We have to decide how much we want to send her (half days, three days a week, full time...etc) so we are discussing that. I need to write a future post all about this place.
-Charlie has had another ear infection with a few days of fever. One of his ear tubes has dislodged so he is going to have another tube surgery on Dec. 2. Right now he is on antibiotics again to hold him over until his surgery. I am excited to get that done so we don't have to deal with ear aches and antibiotics anymore.
-I had my first choir concert this past Tuesday night. My 1st and 2nd graders sang with the 3rd-5th graders so my Dad and I were able to plan and direct the concert together. It went so well; I was very proud of our students. It was a blessing to be able to experience this with my Dad and learn from him since he has done this before. I really love my job at Zeeland Christian. Being able to go to work 2 days each week has been such a good thing for me.
-We are heading to Chicago this weekend for more ABR training for Ruby. Lately she has been using her hands so much more and I know it is because of all the ABR work we are doing on her shoulders and shoulder blades. I am excited to find out how they think she is doing and to get new exercises to work on.
-Ruby started another med last week for her tonic seizures (the bigger nasty ones). Last week she had 6 of them which is a really bad week for her, but this week she hasn't had one since Sunday so we are hoping they are calming down.
-We meet with the dietician and it looks like we will try the ketogenic diet again, but we probably won't be able to get into the hospital to start it until February.
That is a little glimpse into what has been going on over here. I will try to post again soon!
A few random happenings from the last week....
-We visited Ruby's school (the Ottawa Area Center) last Friday. It is a fabulous place and it will be a great fit for Ruby's needs. The want her to start after spring break already. She won't even be three then so it will be hard to send her off to school already that young, but I think she will love it once she adjusts. We have to decide how much we want to send her (half days, three days a week, full time...etc) so we are discussing that. I need to write a future post all about this place.
-Charlie has had another ear infection with a few days of fever. One of his ear tubes has dislodged so he is going to have another tube surgery on Dec. 2. Right now he is on antibiotics again to hold him over until his surgery. I am excited to get that done so we don't have to deal with ear aches and antibiotics anymore.
-I had my first choir concert this past Tuesday night. My 1st and 2nd graders sang with the 3rd-5th graders so my Dad and I were able to plan and direct the concert together. It went so well; I was very proud of our students. It was a blessing to be able to experience this with my Dad and learn from him since he has done this before. I really love my job at Zeeland Christian. Being able to go to work 2 days each week has been such a good thing for me.
-We are heading to Chicago this weekend for more ABR training for Ruby. Lately she has been using her hands so much more and I know it is because of all the ABR work we are doing on her shoulders and shoulder blades. I am excited to find out how they think she is doing and to get new exercises to work on.
-Ruby started another med last week for her tonic seizures (the bigger nasty ones). Last week she had 6 of them which is a really bad week for her, but this week she hasn't had one since Sunday so we are hoping they are calming down.
-We meet with the dietician and it looks like we will try the ketogenic diet again, but we probably won't be able to get into the hospital to start it until February.
That is a little glimpse into what has been going on over here. I will try to post again soon!
Monday, November 8, 2010
Oral Motor Evaluation
Ruby's oral eval at Mary Free Bed went well today. The same therapist that worked with Ruby last fall was the one who did her evaluation today. It was encouraging to hear she thought Ruby looked a lot better! She liked that Ruby had more strength in her cheeks and tongue and that she was bring her hands up to her mouth, chewing on her fingers and trying to hold her bottle. Ruby definetely has a lot to work on though on the therapists thinks feeding therapy will be helpful for her again, but she doesn't think we should start this therapy and the ketogenic diet at the same time. We decided to wait to see what the dietician says about starting the diet. After we meet with her Monday we will have a better idea if we will do the diet or not. If we do start it, then we will hold off on feeding therapy until Ruby gets used to the diet. It was nice to get some encouraging comments about Ruby's progress. I don't always see the progress because I am with her everyday.
Unfortunately, Ruby had two tonic seizures today. She hasn't had two of these kind of seizures in one day since this summer. She was really wiped out from these nasty seizures and so she was out of sorts and fussy most of the day. I think this means we will be adding Banzel to the med list tomorrow or Wednesday. We want to give the med a try before the diet. Hopefully that slows them down. We appreciate your prayers; we keep praying God will give us direction as we make medical decisions for Ruby.
Unfortunately, Ruby had two tonic seizures today. She hasn't had two of these kind of seizures in one day since this summer. She was really wiped out from these nasty seizures and so she was out of sorts and fussy most of the day. I think this means we will be adding Banzel to the med list tomorrow or Wednesday. We want to give the med a try before the diet. Hopefully that slows them down. We appreciate your prayers; we keep praying God will give us direction as we make medical decisions for Ruby.
Sunday, November 7, 2010
Fall
We had a great time watching Mark's nephews and niece last night. We enjoyed pizza, leftover halloween candy, popcorn, games and a movie. I dominated in Wii bowling :) Mark's brother and sister in law have watched Charlie several times for us so we were swapping favors. It is nice to have family around to be able to do that with.
Today we had a true fall day with family over, chili and applecrisp for lunch, football on TV this afternoon and then a trip to the park where Charlie was thrilled to collect all the leaves he could. I love sunny fall days with family!
Ruby continues to do well with seizures; she only had around 7 or 8 spasms yesterday which is very good for her. We haven't seen a tonic seizure (the newer ones) since Thursday and I hope we don't see on anytime soon. If those continue to creep up then we are going to start a new med to try and stop them. For now though, things are heading in the right direction and we will hope they continue that way.
Tomorrow we have a feeding evaluation with Ruby at Mary Free Bed; hopefully they will tell us that she has made enough improvements to try feeding therapy again. She can eat mashed foods and soft table foods, but she doesn't chew at all and we are hoping to change that eventually. We did feeding therapy last fall but she didn't make enough progress so they had to discharge her....that was hard for me to swallow. I hope we hear encouraging things from the therapists tomorrow.
Today we had a true fall day with family over, chili and applecrisp for lunch, football on TV this afternoon and then a trip to the park where Charlie was thrilled to collect all the leaves he could. I love sunny fall days with family!
Ruby continues to do well with seizures; she only had around 7 or 8 spasms yesterday which is very good for her. We haven't seen a tonic seizure (the newer ones) since Thursday and I hope we don't see on anytime soon. If those continue to creep up then we are going to start a new med to try and stop them. For now though, things are heading in the right direction and we will hope they continue that way.
Tomorrow we have a feeding evaluation with Ruby at Mary Free Bed; hopefully they will tell us that she has made enough improvements to try feeding therapy again. She can eat mashed foods and soft table foods, but she doesn't chew at all and we are hoping to change that eventually. We did feeding therapy last fall but she didn't make enough progress so they had to discharge her....that was hard for me to swallow. I hope we hear encouraging things from the therapists tomorrow.
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