June 12, 2013
Outside
It's been officially summer here for a while now. Rachel is in a break between regular school and summer school so that keeps me pretty busy. We spend most of our afternoons outside in the water!
May 22, 2013
Finding a Voice
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| "Hey, Rachel, smile please" - this is what I get. |
A while ago, I had a meeting with Rachel's teacher and speech therapist to talk about some things and to update her IEP. At that time, I discussed my concern for Rachel's speech and her ability to communicate with those around her. At three and a half, Rachel still does not talk. She has sounds that she substitutes for some words but they are not something anyone would understand. She also has signs and while she has a pretty expansive vocabulary with those, it's not enough. There are days she stands there and signs at me "more" and that is it because she doesn't know the sign for what she wants/needs. I hate seeing Rachel so frustrated because there is that barrier in her way. I asked her teacher and her speech therapist when we would start looking in to alternative ways for her to communicate. Her teacher suggested that she would start using the Go Talk 4 with Rachel in class and her speech therapist would use it during therapy time. I said, ok, let's do it.
About a month later I contacted her teacher and I was told Rachel was doing great. I set up a meeting with her speech therapist and I got to see video of Rachel using the device. It was pretty cool! The speech therapist recently attended a conference where she learned about the Acccent. This device is more advanced and has many more options for works and phrases. We have started the ball rolling on getting this device for Rachel. We are all very excited to see how this helps her. I want her to be able to talk to anyone, but especially me. I would love to know what really is going on inside that little head of hers. Hopefully, this device with bridge that gap between knowledge and speech until her speech catches up. The end goal is for Rachel to be verbal, and hopefully some day she will be, but I am not waiting for that to happen while she sits frustrated and misunderstood. I'll update as we learn more.
May 21, 2013
Feeding Clinic
I took Charlie to the local feeding clinic a week or so ago hoping to get some direction on how to get him to branch out his food selections. He is still holding strong on mostly carbs (bread, crackers, cereal) and fruit (bananas, apples, grapes, pears and peaches in syrup, raisins, craisins, and freeze dried apples and mangos). He has pretty much stopped eating any purees which means getting any veggies in to his diet has pretty much stopped unless you count the diced canned carrots that he will eat. His only source of protein besides his formula (yes, he's still on it) are chicken nuggets. So, as you can see, we cannot take him off his formula until he gets some more protein and fat into his diet. I would be OK with no veggies if we could get him to eat some meat or even peanut butter!
I was told that he has a slightly weak bite and lateral movement with his tongue and we were given a nuk tool to help strengthen his muscles. Yay. Because I didn't see enough of those things with Rachel. We also have mouth exercises to do with our hands in his mouth. Again, yay.
It was also suggested we try "chaining" foods. For example, the chicken nuggets. At this point he will ONLY eat Tyson's regular chicken nuggets. The clinic suggested getting the nuggets in a different shape and adding them to the regular ones to see if he would eat them. Once he does, we use a different brand, then chicken fingers, then eventually to breaded and baked chicken at home. All with the end result in mind being that he will branch out to other sources of protein. They want me to try taking a liked food like crackers and adding PB or hummus to it. I've tried that before and he's flat out refused the crackers. I guess I'll keep trying. Sigh.
Since he cannot have dairy or soy, I cannot rely on milk, cheese or yogurt to get him the fat and protein he needs to grow and that is what makes this most difficult. We will try dairy again when he turns two but until then he'll continue receiving formula.
There is a great blog called Mealtime Hostage that I've been reading and it's amazing the similarities this blog writer's son and Charlie have in common. Her blog is so insightful and informative. Check is out if you have a child in the same boat as Charlie. You won't regret it!
I was told that he has a slightly weak bite and lateral movement with his tongue and we were given a nuk tool to help strengthen his muscles. Yay. Because I didn't see enough of those things with Rachel. We also have mouth exercises to do with our hands in his mouth. Again, yay.
It was also suggested we try "chaining" foods. For example, the chicken nuggets. At this point he will ONLY eat Tyson's regular chicken nuggets. The clinic suggested getting the nuggets in a different shape and adding them to the regular ones to see if he would eat them. Once he does, we use a different brand, then chicken fingers, then eventually to breaded and baked chicken at home. All with the end result in mind being that he will branch out to other sources of protein. They want me to try taking a liked food like crackers and adding PB or hummus to it. I've tried that before and he's flat out refused the crackers. I guess I'll keep trying. Sigh.
Since he cannot have dairy or soy, I cannot rely on milk, cheese or yogurt to get him the fat and protein he needs to grow and that is what makes this most difficult. We will try dairy again when he turns two but until then he'll continue receiving formula.
There is a great blog called Mealtime Hostage that I've been reading and it's amazing the similarities this blog writer's son and Charlie have in common. Her blog is so insightful and informative. Check is out if you have a child in the same boat as Charlie. You won't regret it!
May 20, 2013
30 Blankets in 30 Days
It's just about summer everywhere and I know a lot of moms are packing away the winter items. Do you have any warm, snuggly baby blankets that you no longer need? Please think about donating them to 30 Blankets in 30 Days to help us get a head start on our delivery!
May 14, 2013
MUD
On the first warm day of the spring, I broke out the sprinkler.
Charlie was thrilled. Rachel - not so much. She liked sitting in the shade eating her cookies and drinking some juice.
I went inside to get some towels and came back out side to this...
It was then that I saw in to the future of what raising a boy is really going to be like.
Charlie was thrilled. Rachel - not so much. She liked sitting in the shade eating her cookies and drinking some juice.
I went inside to get some towels and came back out side to this...
It was then that I saw in to the future of what raising a boy is really going to be like.
May 13, 2013
Pat A Cake
Rachel wanted to push her pat a cake skills by attempting the song with Dada's fire gloves.
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| she's watching her reflecting in the door |
May 12, 2013
Happy Mother's Day!
I never thought I would be a part of this day but here I am celebrating my third. It seems like forever ago that I held Rachel in my arms for the first time, the little girl who came in so quickly and complicated and forever turned our world upside down. I never thought I could love another baby so much. Until I had Charlie. Both were tough babies. Both wore me out until I was tired to my bones. But both have made me who I am. Wishing every mother out there a wonderful day!
May 10, 2013
Family Photos!
In March, a local photographer was offering a free 21 minute session in honor of 3:21 - World Down Syndrome Day. We were lucky enough to receive this awesome gift! We hadn't had a family photo taken since Rachel was 11 months old. It was LONG overdue. Here are some of the photos that were taken.
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| itsy bitsy spider |
May 2, 2013
So, Officer, It's Like This
It's been a while since my last blog post but my new computer should be here soon. I hate blogging without pictures because I KNOW that is the only real reason anyone reads this thing but I thought I needed to write about the wonderful last week we had getting to know our local law enforcement and fire team.
On Monday on our way to drop off Rachel at school, I was slowing down for a red light when out of the blue I heard a huge noise and I ended up hitting the car in front of us. Turns out we were struck from behind by another car. After sitting there dazed for a moment I checked on the kids and they were ok. Then I got out to inspect the car and check on the other people. I went back to the girl who hit us. She was crying and proceeded to tell me that she didn't have insurance, that she didn't have her car tags yet and that something was wrong with the breaks. Um, lady, if you think that is going to keep me from calling the police you are sadly mistaken. The fire rescue team complete with the engine came along with about 3 or 4 other police cars. There really wasn't any need for more than one or two cops but it's nice to feel cared about.
On Wednesday, we are once again taking Rachel to school. I open the car door for Rachel to get in, close it and then I go around to the other side to buckle Charlie in. I throw my keys and wallet into my front seat while I do that. I then close his door and am about to go around to buckle Rachel in when I hear the car doors lock shut. OH. NO. Rachel got in to the front seat and locked them inside. I didn't think that was possible with the Honda but it happened so I guess it is! After about 5 minutes of trying to get Rachel to push the key buttons again, I gave up and called 911. They sent out the fire team again along with another police officer. I recognized the one fireman from Monday. Thankfully, he did not recognize us.
The Honda is truly a very hard vehicle to break in to. They couldn't get the lock pull, they tried pulling open the car door handle but it didn't unlock the door, and then they tried to open the locks with the switch inside but it was too difficult. By some stroke of luck, Rachel had left the keys on the passenger side seat with the car door opener face up. The firemen were able to push that small button on the key chain opener to get the car open! Holy cow, I was relieved! The poor kids were crying, hysterical messes but ok.
While I am very thankful for the work the rescue teams and law enforcement do here, I do not want to see them again for a very long time!
On Monday on our way to drop off Rachel at school, I was slowing down for a red light when out of the blue I heard a huge noise and I ended up hitting the car in front of us. Turns out we were struck from behind by another car. After sitting there dazed for a moment I checked on the kids and they were ok. Then I got out to inspect the car and check on the other people. I went back to the girl who hit us. She was crying and proceeded to tell me that she didn't have insurance, that she didn't have her car tags yet and that something was wrong with the breaks. Um, lady, if you think that is going to keep me from calling the police you are sadly mistaken. The fire rescue team complete with the engine came along with about 3 or 4 other police cars. There really wasn't any need for more than one or two cops but it's nice to feel cared about.
On Wednesday, we are once again taking Rachel to school. I open the car door for Rachel to get in, close it and then I go around to the other side to buckle Charlie in. I throw my keys and wallet into my front seat while I do that. I then close his door and am about to go around to buckle Rachel in when I hear the car doors lock shut. OH. NO. Rachel got in to the front seat and locked them inside. I didn't think that was possible with the Honda but it happened so I guess it is! After about 5 minutes of trying to get Rachel to push the key buttons again, I gave up and called 911. They sent out the fire team again along with another police officer. I recognized the one fireman from Monday. Thankfully, he did not recognize us.
The Honda is truly a very hard vehicle to break in to. They couldn't get the lock pull, they tried pulling open the car door handle but it didn't unlock the door, and then they tried to open the locks with the switch inside but it was too difficult. By some stroke of luck, Rachel had left the keys on the passenger side seat with the car door opener face up. The firemen were able to push that small button on the key chain opener to get the car open! Holy cow, I was relieved! The poor kids were crying, hysterical messes but ok.
While I am very thankful for the work the rescue teams and law enforcement do here, I do not want to see them again for a very long time!
April 13, 2013
Nothing is Wrong
Just in case anyone is worried about the long absence from the blog, don't worry, it's just that our computer at home died and I don't have anyway to upload photos at the moment. Once we get something new, I have a bunch of stuff to upload! Stay tuned!
March 21, 2013
A Girls Only Trip
March 10, 2013
So Close We Can Almost Taste It
Spring is near!
Spring means open windows, good bye sickness and hello sunshine. We took advantage of that all weekend. Lots of time outside in the backyard and at the park.
Spring means open windows, good bye sickness and hello sunshine. We took advantage of that all weekend. Lots of time outside in the backyard and at the park.
March 5, 2013
Kidneys and Tubes
This is a nice medical update.
Both Rachel and Charlie will be getting tubes in the next couples weeks. I have them scheduled to get them done at the same time. Unfortunately, we are not getting a two for one price!
Rachel had her semi-annual appointment with the Kidney doctor. The news wasn't the best. While her bloodwork and urine sample came back ok, the ultrasound reveled that one kidney did not grow at all since her last appointment and the other grew very little and is showing signs of tissue death. The doctor assured us that Rachel has many years before we think about a transplant but, honestly, it doesn't make thinking about it any easier.
Both Rachel and Charlie will be getting tubes in the next couples weeks. I have them scheduled to get them done at the same time. Unfortunately, we are not getting a two for one price!
Rachel had her semi-annual appointment with the Kidney doctor. The news wasn't the best. While her bloodwork and urine sample came back ok, the ultrasound reveled that one kidney did not grow at all since her last appointment and the other grew very little and is showing signs of tissue death. The doctor assured us that Rachel has many years before we think about a transplant but, honestly, it doesn't make thinking about it any easier.
February 28, 2013
The Lady at the Cafeteria
I don't think I've ever told this story to anyone.
While Rachel was in the NICU at Brenner Children's Hospital, Stephen and I would go down to their cafeteria to eat quite often. There was a woman who most every day went around and cleaned the tables. She would remove trash, spray down the table and wipe them off. She had Down syndrome.
I felt like that was a cruel thing for life to do to me. As if it was shoving the obvious in my face saying, "this is what will become of your daughter." What made it worse was this woman looked unhappy. She did her job with no joy or even pride, it seemed. I did not like her immediately and I hated each time I had to see her but at the same time I would glace sideways at her looking for clues to how my daughter would be. I could not even smile at her.
I don't know why this has stuck with me, this woman who worked at that cafeteria. Sometimes I sit and try to think of why she was there at the same time Rachel was. Why I was shown this person who seemed so unhappy. What would have happened if I had smiled at her or talked to her? Loving Rachel for three and a half years has opened my heart more than I thought possible. I wish I could go back to that cafeteria and find that woman and say hello and engage her in conversation. I hope she has found a job that makes her happy.
While Rachel was in the NICU at Brenner Children's Hospital, Stephen and I would go down to their cafeteria to eat quite often. There was a woman who most every day went around and cleaned the tables. She would remove trash, spray down the table and wipe them off. She had Down syndrome.
I felt like that was a cruel thing for life to do to me. As if it was shoving the obvious in my face saying, "this is what will become of your daughter." What made it worse was this woman looked unhappy. She did her job with no joy or even pride, it seemed. I did not like her immediately and I hated each time I had to see her but at the same time I would glace sideways at her looking for clues to how my daughter would be. I could not even smile at her.
I don't know why this has stuck with me, this woman who worked at that cafeteria. Sometimes I sit and try to think of why she was there at the same time Rachel was. Why I was shown this person who seemed so unhappy. What would have happened if I had smiled at her or talked to her? Loving Rachel for three and a half years has opened my heart more than I thought possible. I wish I could go back to that cafeteria and find that woman and say hello and engage her in conversation. I hope she has found a job that makes her happy.
February 22, 2013
Growing Up
In the midst of all this sickness, there is a silver lining. I've learned that my big girl really is maturing. Doctor appointments and her have not mixed for some time. I dreaded each and every time we had to go to some waiting room or some office and have some kind of something done. It always involved me holding her in a wrestling move while the doctor tried to get done what they needed to do.
We had to go to the ER a couple weeks ago. Again, I was dreading it. I just KNEW what was going to happen. Only it didn't. Rachel sat with us and watched movies while we waited. She calmly let the doctor listen to her heart and then later administer a breathing treatment. She sat with me on the bed in the not private exam room without a door and had snacks. Never once did she try and run away or arch her back and scream. This was a 4 hour visit during the worst time of the day, dinner time. I was blown away.
The last few visits at the pediatrician went just as well. The doctor looked in her ears and Rachel just sat still and let her. I don't think that has ever happened before. They needed to get an oxygen reading and used a device that monitors it using her hand. She let the nurse do it. She also patiently waited in the exam room reading books and using a bead maze.
Today we went to the hospital for some chest x-rays (She does not have pneumonia!). We had to register and she sat in the chair next to mine and drew on some paper with a pen while I gave the tech our information. In the imaging waiting room she read magazines. For the x-ray she stool nicely on a stool and afterwards even took her little "apron" back to the place the tech got it from. Not one fit. Not one argument from her. Just absolutely calm and wonderful. I never thought we would ever get to this spot in time so soon at three and a half years old. I am so proud of how my girl is growing up and just amazed that she is doing all this while constantly being so sick. I love you my Rachel girl!
We had to go to the ER a couple weeks ago. Again, I was dreading it. I just KNEW what was going to happen. Only it didn't. Rachel sat with us and watched movies while we waited. She calmly let the doctor listen to her heart and then later administer a breathing treatment. She sat with me on the bed in the not private exam room without a door and had snacks. Never once did she try and run away or arch her back and scream. This was a 4 hour visit during the worst time of the day, dinner time. I was blown away.
The last few visits at the pediatrician went just as well. The doctor looked in her ears and Rachel just sat still and let her. I don't think that has ever happened before. They needed to get an oxygen reading and used a device that monitors it using her hand. She let the nurse do it. She also patiently waited in the exam room reading books and using a bead maze.
Today we went to the hospital for some chest x-rays (She does not have pneumonia!). We had to register and she sat in the chair next to mine and drew on some paper with a pen while I gave the tech our information. In the imaging waiting room she read magazines. For the x-ray she stool nicely on a stool and afterwards even took her little "apron" back to the place the tech got it from. Not one fit. Not one argument from her. Just absolutely calm and wonderful. I never thought we would ever get to this spot in time so soon at three and a half years old. I am so proud of how my girl is growing up and just amazed that she is doing all this while constantly being so sick. I love you my Rachel girl!
February 21, 2013
Let's Tally It Up
Croup -2
Flu - 3
Stomach Flu - 2
RSV- 1
Ear Infections - 6
Bronchitis - 1
Bronchiolitis - 1
All of that in just 3 months. If you have a house in a nice tropical place and would like to invite us to use it, please leave a comment.
February 18, 2013
February 8, 2013
February 7, 2013
Outside, Outside
We went out a couple times to enjoy the nice weather this week. The kids have fun out in the yard. Rachel is the first to want to go inside. I think Charlie could stay out there all day.
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| playing with the scraps of leaves! |
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| running down the "hill" - very small incline |
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| he loves his shovels |
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