I didn't end up posting anything about last week's therapy because it didn't differ from the week before. But this time, she did make a little bit of progress. Rachel didn't take a bite of anything new, but she did lick several new things. I don't even remember what the foods were that she put on her tongue. Well, one was a jelly bean. She also licked a peach yogurt melt. She will usually only eat the pink or purple yogurt melts, so I was glad to see her almost eat the peach ones.
It still amazes me that I get so excited about her just licking a food. The therapy is mostly playing with the foods. She is seated at a table and Julie talks about the food's shape, color, and texture. Then she kisses the food or licks it. Rachel was pretty receptive to the therapy this time, which is a change from the last two sessions. I was glad to see it.
Another good thing that happened over the last week is that Rachel is showing an interest in feeding herself with a spoon. I don't think I've even talked about this before, but she has never spoon fed herself. When I talk about how she will eat strawberry banana baby food, she isn't feeding herself like most three year old's would be. I'm still spoon feeding her. We've given her the spoon before countless times and she has never been interested in feeding herself. She will actually hold a spoon while I feed her, but has always become upset if that spoon gets food on it. Anyway, that all changed in the last couple of days. I was feeding her and she grabbed the spoon and put it in her mouth. Then she wanted to feed herself a couple of bites. I am so excited about this.
I don't remember if I have mentioned that she has needed to have a distraction while being fed too. Her distraction has always been a pencil and paper. She will draw while I get food into her mouth. This has been the only thing that has worked for us for months. Julie has suggested that we take all distractions that are not related to food away. So this past week, we've been giving her carrot or celery sticks to play with. I've also been offering the same foods I'm feeding Sophia and Morgan. Rachel will play with those foods and stab them with a fork. Of course they don't go near her mouth, but this is all progress for the little girl who would gag and practically throw up if you put food in front of her.
She is so interested in food. She almost ate some dried crunchy apple today. I can tell she is wanting to try something new. She will pick a new food up or point to it and say, "eat it" but then puts it down. I'm just glad that she is showing interest. I know her therapy is really helping her. It's just such a slow process that it can be really discouraging, but I do have faith that it is working.
It's still really difficult to watch my skinny minnie daughter only drink milk and hardly eat anything. Her hair is so thin and dry, and she has days where she has those awful dark circles under her eyes. I wonder if it's because she isn't getting the proper nutrition. I'm sure it probably is. She does get a multi vitamin, but I wish I could get her to drink pediasure. It's so frustrating and I worry about her every day.
So prayer warriors..... I need you again!
Saturday, March 31, 2012
Thursday, March 22, 2012
When you just know
While the girls were all in school this afternoon, my mom and I went out to lunch. We talked about the recent transition from the girls' therapy program to their preschool programs and how it's been a tough transition for me.
In their therapy program, I got constant feedback about how the girls were doing and felt very supported by everyone in the program. I knew that there was always someone to listen to my concerns and offer up suggestions on how to handle certain situations with the girls. I was there for every toddler class and therapy session and felt very involved in the whole process.
With the preschool program, I don't get as much feedback. Well okay, Sophia and Morgan's teacher always talks about how the class went and how the girls did when I pick them up. Rachel's class has eleven kids in it, so when I pick her up, there isn't time to discuss the details I crave. The teacher and her aide's are quite busy making sure the right kid is getting handed off to the right parent. I completely understand that they aren't going to hold my hand through this process. I know I could ask for more details by phone or email, but I really don't want to be that "annoying" parent who needs to know every little thing.
So at lunch, I was telling my mom about this and how I wished I knew more about how Rachel was doing in class. Then just about two hours after our conversation, we went to pick Rachel up from school. As my mom and I were getting the girls into the truck, her class OT was walking out to her car and stopped to talk to me. She ended up giving me all the details I've ever wanted to know about how Rachel is doing in class. She told me that Rachel is behaving really well, following directions, sitting well for circle time, waits in line for her turn, loves music time, and is just a joy to have in class. She told me about how snack time goes and how happy Rachel is at recess. I seriously almost cried because I was so happy and relieved to know all of this. It made my day!
I just know that God is hearing me. He knows what I need and is blessing me with it. It's moments like this when I realize that I need to stop worrying so much and trust in Him.
In their therapy program, I got constant feedback about how the girls were doing and felt very supported by everyone in the program. I knew that there was always someone to listen to my concerns and offer up suggestions on how to handle certain situations with the girls. I was there for every toddler class and therapy session and felt very involved in the whole process.
With the preschool program, I don't get as much feedback. Well okay, Sophia and Morgan's teacher always talks about how the class went and how the girls did when I pick them up. Rachel's class has eleven kids in it, so when I pick her up, there isn't time to discuss the details I crave. The teacher and her aide's are quite busy making sure the right kid is getting handed off to the right parent. I completely understand that they aren't going to hold my hand through this process. I know I could ask for more details by phone or email, but I really don't want to be that "annoying" parent who needs to know every little thing.
So at lunch, I was telling my mom about this and how I wished I knew more about how Rachel was doing in class. Then just about two hours after our conversation, we went to pick Rachel up from school. As my mom and I were getting the girls into the truck, her class OT was walking out to her car and stopped to talk to me. She ended up giving me all the details I've ever wanted to know about how Rachel is doing in class. She told me that Rachel is behaving really well, following directions, sitting well for circle time, waits in line for her turn, loves music time, and is just a joy to have in class. She told me about how snack time goes and how happy Rachel is at recess. I seriously almost cried because I was so happy and relieved to know all of this. It made my day!
I just know that God is hearing me. He knows what I need and is blessing me with it. It's moments like this when I realize that I need to stop worrying so much and trust in Him.
Friday, March 16, 2012
Feeding Therapy Friday
I've decided that I need to start posting a recap of Rachel's feeding therapy every week. It's such an emotional roller coaster, and I want to be able to go back and read about what her sessions are like each time. I think this will help me to see her progress more clearly. I tend to get really discouraged by the harder sessions, and I need to be able to see the bigger picture.
I could tell as soon as Rachel got into her chair that the session wasn't going to go well. She just wasn't into it at all. Well, the first indication was when she didn't want me to leave her. She goes into a room with Julie (her therapist) alone and I go into another room where I can watch behind the two way mirror. She's usually happily goes into that room. This time, they were playing with round foods to start. Julie usually follows a theme with a color or shape of food. They talk about the texture and play with the food.
They started with one of Rachel's preferred foods, which is Gerber yogurt melts. She ate a couple of them and asked for more. Then she got frustrated that instead of getting more, she was offered a freeze dried banana. At first, I thought she might take a bite. She did eat freeze dried bananas briefly last summer. So instead of eating it, she threw it at Julie and said "no." This set the tone of how the rest of the session went. She wouldn't put anything in her mouth, and pretty much didn't even play with the food as usual. When handed any kind of food, she would crush it or tear it and toss it off of the table. Things are kept positive so she's not reprimanded for tossing the food. She is simply told "food stays on the table" and Julie puts it back on the table just out of Rachel's reach. Previously when Rachel would throw food, I would remove her from the situation. She learned that it was her escape. With this type of therapy, there is no escape. So basically, nothing really good came from this session. Julie does an amazing job handing Rachel though. She keeps her interest even when there is no cooperation.
It's okay though. It's hard to watch when she has a bad therapy day, but I've noticed lately that she tends to take two steps forward and then one step back. Last week's session went pretty well. She ate regular bbq potato chips and has continued to eat them all week. She also licked a pretzel stick.
Here is a list of what she eats right now.
Animal crackers (but they must be the Costco crackers)
Gerber yogurt melts
BBQ Baked Lays
Gerber stage 3 Strawberry Banana baby food
Taco Bell Cinnamon Twists (I'm the crazy lady who goes to the Taco Bell drive thru and orders 5 bags of twists every few days.)
New food: regular BBQ Lays Potato chips
She is also slightly biting in to an apple. It started with red apples with the peelings still on. Now I will peel half of the apple and hand it to her. First she licked it, and now she is putting her teeth into it... not taking a bite, but thinking about it.
She also took a bite out of a Chips-Ahoy crunchy chocolate chip cookie this week. She spit it out, but at least she took a bite.
This is all progress. Sometimes I get really frustrated and feel like we're burning through one hundred dollar bills with this therapy, but she IS making progress. SOS therapy is specifically designed for kids like her. It's a slow process, but we're only about three months in. We were told this will take a year to overcome. For some reason with Rachel, I think it might take longer than that. But I am trying to keep the faith.
Until next week.......
I could tell as soon as Rachel got into her chair that the session wasn't going to go well. She just wasn't into it at all. Well, the first indication was when she didn't want me to leave her. She goes into a room with Julie (her therapist) alone and I go into another room where I can watch behind the two way mirror. She's usually happily goes into that room. This time, they were playing with round foods to start. Julie usually follows a theme with a color or shape of food. They talk about the texture and play with the food.
They started with one of Rachel's preferred foods, which is Gerber yogurt melts. She ate a couple of them and asked for more. Then she got frustrated that instead of getting more, she was offered a freeze dried banana. At first, I thought she might take a bite. She did eat freeze dried bananas briefly last summer. So instead of eating it, she threw it at Julie and said "no." This set the tone of how the rest of the session went. She wouldn't put anything in her mouth, and pretty much didn't even play with the food as usual. When handed any kind of food, she would crush it or tear it and toss it off of the table. Things are kept positive so she's not reprimanded for tossing the food. She is simply told "food stays on the table" and Julie puts it back on the table just out of Rachel's reach. Previously when Rachel would throw food, I would remove her from the situation. She learned that it was her escape. With this type of therapy, there is no escape. So basically, nothing really good came from this session. Julie does an amazing job handing Rachel though. She keeps her interest even when there is no cooperation.
It's okay though. It's hard to watch when she has a bad therapy day, but I've noticed lately that she tends to take two steps forward and then one step back. Last week's session went pretty well. She ate regular bbq potato chips and has continued to eat them all week. She also licked a pretzel stick.
Here is a list of what she eats right now.
Animal crackers (but they must be the Costco crackers)
Gerber yogurt melts
BBQ Baked Lays
Gerber stage 3 Strawberry Banana baby food
Taco Bell Cinnamon Twists (I'm the crazy lady who goes to the Taco Bell drive thru and orders 5 bags of twists every few days.)
New food: regular BBQ Lays Potato chips
She is also slightly biting in to an apple. It started with red apples with the peelings still on. Now I will peel half of the apple and hand it to her. First she licked it, and now she is putting her teeth into it... not taking a bite, but thinking about it.
She also took a bite out of a Chips-Ahoy crunchy chocolate chip cookie this week. She spit it out, but at least she took a bite.
This is all progress. Sometimes I get really frustrated and feel like we're burning through one hundred dollar bills with this therapy, but she IS making progress. SOS therapy is specifically designed for kids like her. It's a slow process, but we're only about three months in. We were told this will take a year to overcome. For some reason with Rachel, I think it might take longer than that. But I am trying to keep the faith.
Until next week.......
Monday, March 5, 2012
Paro-what-tis???
For about a week, I've been having these weird random pains on my cheek right below my left ear. I stopped at the grocery store on my way home from my workout last weekend (where my trainer kicked my butt as usual) and my cheek was hurting. Without thinking about it too much, I rubbed where it hurt and felt a lump. I figured it was just a swollen gland or something. My stress level has been through the roof lately and I'm just feeling so exhausted. So I figured I just wore myself out. But I'm the type who goes to the doctor if I have any concern, no matter how small. (If you lost a sister at a young age, you would be like me too.)
My doctor told me it is Parotitis, which is a swollen or blocked salivary gland. This kind of random crap seems to happen to me. It's usually caused by a virus or bacterial infection. Well, all the girls were sick and I had a bit of what they had, so maybe that's why. Either that or I am just way too stressed out and my immune system is suffering because of it. Another reason people get parotitis is because of poor oral hygiene, and I simply do NOT have poor oral hygiene. Ever since my dentist told me that almost all of my tooth enamel was destroyed from puking so much during my pregnancy (I sometimes threw up 5 times a day and that lasted almost the whole pregnancy), I am beyond careful when it comes to my teeth. I brush twice a day with prescription toothpaste and floss not once, but sometimes two times a day! So yeah... Let's just be clear that it's not due to that!
So I'm being treated with antibiotics. Heck, everyone in the house has been on antibiotics so now it's my turn. If it doesn't clear up in two weeks, I will be referred to a head and neck surgeon. When my doctor told me that, I actually started laughing. Like I don't have enough stress to deal with. Let's just throw this in for fun. She did make me feel better by saying that 90% of these cases clear up on their own. But if it doesn't, apparently my face could swell up. Bet that would be sexy......
I sent a text to a friend and told her about my diagnoses. She called me a freak of nature. I am starting to think she might be right!
Thursday, March 1, 2012
Pneumonia or something like it
Right after the girls' first week of preschool, they all got sick. It started with Rachel. She had a runny nose and a cough that got worse on Valentines day night. Then Sophia and Morgan had it the next day. I thought it was just a common cold, but a few days in, they all developed fevers. A few days later on Friday, Rachel wasn't herself at all. She was barely awake laying around. It suddenly dawned on me that this was the same way she acted last year when she was diagnosed with pneumonia. I was lucky to get her an appointment for that afternoon.
Just like last year, Dr. A didn't hear anything suspicious, but sent us for an x ray to be sure. She had some crud in both sides of her lungs. After a lengthy conversation with Dr. A, we decided to go ahead and try oral antibiotics. I was hopeful that we'd be able to slip the medicine into her milk or juice since forcing it in her mouth with a medicine dropper is not an option given her feeding issues. I was really upset when we got home and she immediately detected that her milk was um.... flavored. I should have known better. I tried putting it in juice. FAIL.. So I tried putting it in her strawberry banana baby food. Also a big fat FAIL. I knew that if we couldn't get the meds in her orally, we'd have to opt for several days of injections instead. I even ended up calling the advice line and got another doctor to prescribe a medication that apparently didn't have a flavor. Bob went to the pharmacy at around 10pm so we'd have it for her first thing in the morning. We had a back up plan and made an appointment at the weekend clinic for Saturday morning in case we needed to do the injections. I really just wish they made flavorless antibiotics though! Ugh!
That night, she wasn't doing so well. Her fever went up and she was breathing really fast. I ended up posting something on Facebook about how she was doing, and my awesome friend (who is also an ER doctor) ended up coming over to our house....at 11 at night... to check on Rachel and make sure we could wait until morning to take her in to start medication. I'm so lucky to have such a caring and wonderful friend! I am just thankful that she came over. I was able to calm down and not worry so much knowing that she'd be okay.
So of course we couldn't get the second medication in her either. She is very sensitive to any flavors being added to any of her drinks or food. Having recently spent almost one thousand dollars on her feeding therapy over the past few months (out of pocket), we were not about to force feed her anything. We know from experience that it would just set her back. She's come too far in her therapy and we're very much invested in her progress. I ended up taking her in to the weekend clinic to start injections. The pediatrician who treated her irritated the heck out of me. She tried to talk me out of doing shots and forcing Rachel to take the oral medication. She gave me advice about how to hold a child down and make them swallow medicine. It took me a while to make her understand that we can't do that as it could cause a long term food strike or ruin all of the therapy we've done. I sort of felt like crap for subjecting my child to several days of shots. Surprisingly, Rachel did really well with the shots.
On Sunday morning, Sophia woke up and was just about as out of it as Rachel had been the day before. So off to the weekend clinic we went. Sophia didn't even need an x-ray, the doctor could hear the crud in her lungs and sent us home with antibiotics too. When we got home, Morgan wasn't looking good. I ended up calling the clinic again, but they were then closed. So I spoke with an advice nurse and she sent us to the ER since Morgan's breathing was pretty fast. Thankfully, my friend was working that day and kept me company during our visit. Morgan's x-ray didn't look too good either. I'm told it could have been pneumonia or just viral crud, so we were going to treat with antibiotics either way. Thankfully, Morgan and Sophia have no issues taking their medicine orally.
We ended up having to go to the doctor's office for 4 days in a row for Rachel's injections. With all three girls so sick, I hardly got any sleep at all. It was a really miserable week. I ended up getting a slight cold myself. I think we had some sort of flu. My mom was around us the whole time, and Morgan even coughed in her face on more than one occasion. She never got sick since she had a flu shot. I'm kicking myself for not doing flu shots this year. I usually always do them. With the girls' developmental delays and all the crap we've been through, I let it get in my head that a stupid flu shot or vaccines could be the cause of our issues. Ugh... So I kept putting flu shots off. Even Bob got sick, it was just a few days after the girls were better.
I'm happy to say that the girls are all healthy again and went to school all this week. Rachel is doing really well in her class. I'm told she follows directions pretty well and is happy. I've noticed some pretty good changes with her language over the past week too. She's using more words than she has before and is stringing two and three words together now, which is a very big step for her. Sophia and Morgan love their class too. They are working on taking turns and using words instead of screaming out of frustration. I love the girls' teachers and am comforted by how well things are going for them right now. It was a tough transition out of their therapy program.... well, it was tough for me. I think the girls had an easier time with it than I did. Although, I must admit that it has been nice not having people in and out of my house anymore. I don't have to worry about the house being put together or not.
I know it's just a matter of time before the next virus or cold hits our household. Preschool is a germ infested place....blah.........At least the girls will get some immunities built up before they start kindergarten.
(I'm too tired to proof read this......)
Just like last year, Dr. A didn't hear anything suspicious, but sent us for an x ray to be sure. She had some crud in both sides of her lungs. After a lengthy conversation with Dr. A, we decided to go ahead and try oral antibiotics. I was hopeful that we'd be able to slip the medicine into her milk or juice since forcing it in her mouth with a medicine dropper is not an option given her feeding issues. I was really upset when we got home and she immediately detected that her milk was um.... flavored. I should have known better. I tried putting it in juice. FAIL.. So I tried putting it in her strawberry banana baby food. Also a big fat FAIL. I knew that if we couldn't get the meds in her orally, we'd have to opt for several days of injections instead. I even ended up calling the advice line and got another doctor to prescribe a medication that apparently didn't have a flavor. Bob went to the pharmacy at around 10pm so we'd have it for her first thing in the morning. We had a back up plan and made an appointment at the weekend clinic for Saturday morning in case we needed to do the injections. I really just wish they made flavorless antibiotics though! Ugh!
That night, she wasn't doing so well. Her fever went up and she was breathing really fast. I ended up posting something on Facebook about how she was doing, and my awesome friend (who is also an ER doctor) ended up coming over to our house....at 11 at night... to check on Rachel and make sure we could wait until morning to take her in to start medication. I'm so lucky to have such a caring and wonderful friend! I am just thankful that she came over. I was able to calm down and not worry so much knowing that she'd be okay.
So of course we couldn't get the second medication in her either. She is very sensitive to any flavors being added to any of her drinks or food. Having recently spent almost one thousand dollars on her feeding therapy over the past few months (out of pocket), we were not about to force feed her anything. We know from experience that it would just set her back. She's come too far in her therapy and we're very much invested in her progress. I ended up taking her in to the weekend clinic to start injections. The pediatrician who treated her irritated the heck out of me. She tried to talk me out of doing shots and forcing Rachel to take the oral medication. She gave me advice about how to hold a child down and make them swallow medicine. It took me a while to make her understand that we can't do that as it could cause a long term food strike or ruin all of the therapy we've done. I sort of felt like crap for subjecting my child to several days of shots. Surprisingly, Rachel did really well with the shots.
On Sunday morning, Sophia woke up and was just about as out of it as Rachel had been the day before. So off to the weekend clinic we went. Sophia didn't even need an x-ray, the doctor could hear the crud in her lungs and sent us home with antibiotics too. When we got home, Morgan wasn't looking good. I ended up calling the clinic again, but they were then closed. So I spoke with an advice nurse and she sent us to the ER since Morgan's breathing was pretty fast. Thankfully, my friend was working that day and kept me company during our visit. Morgan's x-ray didn't look too good either. I'm told it could have been pneumonia or just viral crud, so we were going to treat with antibiotics either way. Thankfully, Morgan and Sophia have no issues taking their medicine orally.
We ended up having to go to the doctor's office for 4 days in a row for Rachel's injections. With all three girls so sick, I hardly got any sleep at all. It was a really miserable week. I ended up getting a slight cold myself. I think we had some sort of flu. My mom was around us the whole time, and Morgan even coughed in her face on more than one occasion. She never got sick since she had a flu shot. I'm kicking myself for not doing flu shots this year. I usually always do them. With the girls' developmental delays and all the crap we've been through, I let it get in my head that a stupid flu shot or vaccines could be the cause of our issues. Ugh... So I kept putting flu shots off. Even Bob got sick, it was just a few days after the girls were better.
I'm happy to say that the girls are all healthy again and went to school all this week. Rachel is doing really well in her class. I'm told she follows directions pretty well and is happy. I've noticed some pretty good changes with her language over the past week too. She's using more words than she has before and is stringing two and three words together now, which is a very big step for her. Sophia and Morgan love their class too. They are working on taking turns and using words instead of screaming out of frustration. I love the girls' teachers and am comforted by how well things are going for them right now. It was a tough transition out of their therapy program.... well, it was tough for me. I think the girls had an easier time with it than I did. Although, I must admit that it has been nice not having people in and out of my house anymore. I don't have to worry about the house being put together or not.
I know it's just a matter of time before the next virus or cold hits our household. Preschool is a germ infested place....blah.........At least the girls will get some immunities built up before they start kindergarten.
(I'm too tired to proof read this......)
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