The weekly update. Just didn't get around to posting sooner. Good news.. Abby's latest round of test results came back. I spoke with the doctor on Tuesday morning. The doctor went over Abby's labs with a pediatric endocrinologist. The specialist thinks that the most likely explanation for Abby's high alkaline phosphatase is a transient condition, usually preceeded by a stomach bug. For some reason - not sure why, this enzyme, and nothing else, is very elevated. After 2-4 mos the levels drop. The labs showed most the alkaline phosphatase coming from Abby's bones, although her liver results were also abnormal. So please pray, pray, pray that in April when Abby is re-tested her results are normal. Otherwise, she will be referred to the endocrinologist and also need a bone scan to rule out various not-so-good problems. BUT I am clinging to the most likely explanation - that the rotavirus from mid-January did her in for awhile, but she is okay. When the doctor told me the news it was like the Lord was in the room smiling at me!
Next bit of good news.. I've been praying about our finances (or lack of). Deren's parents graciously sent a check to help us out with medical bills, formula, and all that good stuff.
Next bit of good news..(yes, there's more!). Our insurance company, United, has been giving me the royal run-around about paying for the boys' private speech therapy. We switched plans last August, and they were supposed to start paying. I got a bee-in-my-bonnet and called again yesterday. One part of me is thinking, "It's your birthday. Are you just trying to be in a bad mood?" I spoke with the first lady, who was really rude. First she said there were no claims on file, then said they were all still denied because of diagnosis code, then hung up on me when I asked to speak with a supervisor. I called back, ready to lash out at the next person. Instead, I started crying and saying, "Listen, we're poor. Do you know how awful it is to go to the clinic and watch everyone pay their co-pays while we're paying the full amount on everything, when our policy says the visits are supposed to be paid for (at least 1/2)?" The next item on my to-do list was to call and cancel speech therapy, because we had no money for it anymore. This lady on the phone was really nice, and asked me to wait while she looked into the claims. Turns out, they had entered the diagnosis code incorrectly - according to their error the boys were receiving speech therapy for strep throat. No one else prior to this checked to make sure all was correct. Thank God for this one lady who wanted to help (psst - don't spread the word to United - they'd probably fire her)!. Soooooo we are supposed to start getting some money from them within the month, and will be able to resume speech therapy. Hooray!
Friday, February 24, 2006
Monday, February 20, 2006
Sunday, February 19, 2006
In case you missed the gleam in her eyes, let me just say that our little Abby is becoming a wild child. Both her and Joshua have particularly expressive faces - especially when they are making mischief.
It's very cold again today. I didn't go to church - we've been having freezing drizzle off and on during the day. The weather is supposed to get up to the low 50's tomorrow. I hope so, because we are out of groceries.
It's very cold again today. I didn't go to church - we've been having freezing drizzle off and on during the day. The weather is supposed to get up to the low 50's tomorrow. I hope so, because we are out of groceries.
Saturday, February 18, 2006
Baby Shower incident. Went to a baby shower today. You think, "I know the games are always bad, but how bad can it really be?" Ohh.... it was bad... The mom-to-be works for ECI (early childhood intervention - both the boys and now Abby receive ECI services). Most of the attendees were also ECI workers. They spent the entire time cracking jokes about the little kids they work with. After the first joke, when everyone was giggling, I thought "that is soo not funny, but maybe I'm being too sensitive." After joke #40 or 50 - I lost count, I was about ready to launch across the room at these hens. The mom-t0-be knows our kids, so I'm thinking she should have put a stop to it. Instead, she told told joke #1, and cackled throughout the rest of the jokes. I left that place so upset. I'm sure the rest of the gals didn't know about our kids, but still, they are making jokes at the expense of little kids under the age of 3, who are struggling and who have families that are struggling. Yuck. and yuck again.
Now that that's off my chest, let me say "it's cold!" 85 degrees on Thursday, in the 20's today. The kids are all good and stir crazy. All but Joshua took long naps today - it was cold and dreary. I'm getting ready to send Joshua to bed, but the rest will be up hyper for hours to come.
Abby update: she had to have more blood drawn yesterday. The nurse hadn't completed the last lab req form correctly. Poor Abby. She was a trooper, though. I am going to make an appt w/the pediatrician for later this next week. The labs should all be in, and I'll be able to go over them with the doctor. So far, I've been talking with nurses on the phone, and the info I've been given has been inconclusive and confusing, at best. So sorry, there's no news to share. She hasn't been eating well this past week. She has a cold that has gone into her chest, and has been fussy. I think her ears are hurting her, also. Jacob, Rachael, and I also have the crud. Yesterday I felt like someone was standing on top of my chest. So imagine what the kiddos feel like - poor things.
Abby is pulling herself up to kneeling quite a bit. Her favorite 'hang out place' is the toilet. She pulls herself up and throws everything she can get her sticky hands onto into the commode. Wait 'til she can stand!
Now that that's off my chest, let me say "it's cold!" 85 degrees on Thursday, in the 20's today. The kids are all good and stir crazy. All but Joshua took long naps today - it was cold and dreary. I'm getting ready to send Joshua to bed, but the rest will be up hyper for hours to come.
Abby update: she had to have more blood drawn yesterday. The nurse hadn't completed the last lab req form correctly. Poor Abby. She was a trooper, though. I am going to make an appt w/the pediatrician for later this next week. The labs should all be in, and I'll be able to go over them with the doctor. So far, I've been talking with nurses on the phone, and the info I've been given has been inconclusive and confusing, at best. So sorry, there's no news to share. She hasn't been eating well this past week. She has a cold that has gone into her chest, and has been fussy. I think her ears are hurting her, also. Jacob, Rachael, and I also have the crud. Yesterday I felt like someone was standing on top of my chest. So imagine what the kiddos feel like - poor things.
Abby is pulling herself up to kneeling quite a bit. Her favorite 'hang out place' is the toilet. She pulls herself up and throws everything she can get her sticky hands onto into the commode. Wait 'til she can stand!
Sunday, February 12, 2006
First of all - Abby update: no results from the labs yet. The lab had to culture the sample to isolate bone vs. liver, so that apparently takes awhile. Hopefully we'll receive some results soon. Good news - Deren weighed himself and then himself w/Abby yesterday. She was 16-17 lbs, which is way up from last month. Just carrying her around she seems heavier. So good news! Praise the Lord! We started her on soy formula last Tuesday. I was worried she would have a reaction, because at least one sibling (Jacob) is allergic to soy. But so far she is doing well, and likes the taste of the soy formula much better than the nutramagen. Another bonus is that the soy formula is almost $20 less/can. (woohoo!)
Second, I wanted to take the time to write about some happier moments from the past week. We rec'd valentine's cards from my parents on Friday. Rachael divvied them up - "Jacob - balloon" (his card had some balloons on it), "Joshua, - firetruck, "Abby - baby", "momma - heart." Guess you had to be there. She is turning into such a little helper (when she isn't in one of her 'moods' - those who know me well would know what I am referring too!). Earlier on Friday my mom called to check up on us. After we got off the phone I tucked Rachael into her bed for a nap. I asked her "Who loves Rachael?" She said "mamaw loves Rachael" then "papaw", then "Grandma loves Rachael" and then "Jesus loves Rachael."
Jacob continues to play the role of big brother. Abby was playing in the bowls from the tupperware cabinet while Jacob was eating dinner on Thursday. I kept noticing Jacob walk back and forth from the table to Abby. I walked over to Abby to see how she was doing. Jacob had provided her with some potato chips. Then he brought over some applesauce, one spoon at a time, and dumped it in the bowl she was playing with. Finally he sat down next to her and shared his chocolate chip cookie with her.
It looks like Abby is inheriting a lot of Joshua's personality, which means, Look Out! She has yet to pull herself up to standing, but that hasn't stopped her from lobbing rubber duckies into the toilet. She will bypass any toy if she detects something dangerous to play with in the immediate area. She loves her bathtimes, and she is becoming an outdoor queen.
As for Joshua, the weather here turned very cold on Saturday. But that hasn't stopped him. He grabs his coat, chases you down with it, and (silently) begs to be outside. He was sick with a strep throast on Wednesday, and stayed home from school the rest of the week. By Thursday afternoon he was feeling better, and wanted to play in the front yard. Rachael was napping, but Abby saw the door open and scooted (she doesn't crawl, she sits on her bum and scoots around the house) to go outside also. They had a great time. Abby scooted up and down the sidewalk, eating everything in her path. I went in and got her a waffle. She dumped it out on the sidewalk and ate it from there. When I related the story to Deren that night his responses were in the nature of "She ate that?! You just let her do that ?!", etc. But Abby apparently had fun, because every time she hears one of the doors open she scoots as fast as she can to go outside.
Joshua is on a quest to crush all the dead leaves in the neighborhood. He's already mulched the backyard, hence, the fascination with the front (and other people's houses). And now that the dead leaves are getting scarce, he is trying to find suitable substitutes. For example, you give him a potato chip or a piece of crispy bacon to eat, he crumbles it in his hands, then eats the bits off the floor. I came back from errands yesterday and noticed some dried leaf-looking stuff on the bedroom floor. Joshua had found the dried flowers from our wedding, and decided to test their crispiness.
Joshua has also taken to frisking people who come to the house. He's particularly fond of cell phones at the moment, and has no pause diving his hands into strangers' pockets in search of his quest. We had some friends stop by the house last Tuesday to pray for Abby. While Joshua frisked everyone, Jacob ran around in cirlces yelling "Moobee moobee" (aka movie), and Rachael ran after Jacob laughing maniacally. At one point one of the women pointed to Rachael and said "What does she have?" (in terms of disability). I'll admit, the noise level at this house can be overwhelming to someone expecting a subdued time of prayer. On Monday, when we rec'd the initial news of Abby's lab results, my neighbor Monique was here. We grabbed Abby, laid hands on her, and started to pray. Meanwhile, Jacob took that moment to turn the table lamp into a basketball hoop. Monique and I intially tried to ignore him, but with the lamp flying around the living room, and kiddos cackling harder and harder, we had to stop our praying and round up the miscreants. I remember being so thankful for that lamp flying around - one moment I was crying, the next laughing along with their antics. I guess times like that autism can't be all that bad..
Second, I wanted to take the time to write about some happier moments from the past week. We rec'd valentine's cards from my parents on Friday. Rachael divvied them up - "Jacob - balloon" (his card had some balloons on it), "Joshua, - firetruck, "Abby - baby", "momma - heart." Guess you had to be there. She is turning into such a little helper (when she isn't in one of her 'moods' - those who know me well would know what I am referring too!). Earlier on Friday my mom called to check up on us. After we got off the phone I tucked Rachael into her bed for a nap. I asked her "Who loves Rachael?" She said "mamaw loves Rachael" then "papaw", then "Grandma loves Rachael" and then "Jesus loves Rachael."
Jacob continues to play the role of big brother. Abby was playing in the bowls from the tupperware cabinet while Jacob was eating dinner on Thursday. I kept noticing Jacob walk back and forth from the table to Abby. I walked over to Abby to see how she was doing. Jacob had provided her with some potato chips. Then he brought over some applesauce, one spoon at a time, and dumped it in the bowl she was playing with. Finally he sat down next to her and shared his chocolate chip cookie with her.
It looks like Abby is inheriting a lot of Joshua's personality, which means, Look Out! She has yet to pull herself up to standing, but that hasn't stopped her from lobbing rubber duckies into the toilet. She will bypass any toy if she detects something dangerous to play with in the immediate area. She loves her bathtimes, and she is becoming an outdoor queen.
As for Joshua, the weather here turned very cold on Saturday. But that hasn't stopped him. He grabs his coat, chases you down with it, and (silently) begs to be outside. He was sick with a strep throast on Wednesday, and stayed home from school the rest of the week. By Thursday afternoon he was feeling better, and wanted to play in the front yard. Rachael was napping, but Abby saw the door open and scooted (she doesn't crawl, she sits on her bum and scoots around the house) to go outside also. They had a great time. Abby scooted up and down the sidewalk, eating everything in her path. I went in and got her a waffle. She dumped it out on the sidewalk and ate it from there. When I related the story to Deren that night his responses were in the nature of "She ate that?! You just let her do that ?!", etc. But Abby apparently had fun, because every time she hears one of the doors open she scoots as fast as she can to go outside.
Joshua is on a quest to crush all the dead leaves in the neighborhood. He's already mulched the backyard, hence, the fascination with the front (and other people's houses). And now that the dead leaves are getting scarce, he is trying to find suitable substitutes. For example, you give him a potato chip or a piece of crispy bacon to eat, he crumbles it in his hands, then eats the bits off the floor. I came back from errands yesterday and noticed some dried leaf-looking stuff on the bedroom floor. Joshua had found the dried flowers from our wedding, and decided to test their crispiness.
Joshua has also taken to frisking people who come to the house. He's particularly fond of cell phones at the moment, and has no pause diving his hands into strangers' pockets in search of his quest. We had some friends stop by the house last Tuesday to pray for Abby. While Joshua frisked everyone, Jacob ran around in cirlces yelling "Moobee moobee" (aka movie), and Rachael ran after Jacob laughing maniacally. At one point one of the women pointed to Rachael and said "What does she have?" (in terms of disability). I'll admit, the noise level at this house can be overwhelming to someone expecting a subdued time of prayer. On Monday, when we rec'd the initial news of Abby's lab results, my neighbor Monique was here. We grabbed Abby, laid hands on her, and started to pray. Meanwhile, Jacob took that moment to turn the table lamp into a basketball hoop. Monique and I intially tried to ignore him, but with the lamp flying around the living room, and kiddos cackling harder and harder, we had to stop our praying and round up the miscreants. I remember being so thankful for that lamp flying around - one moment I was crying, the next laughing along with their antics. I guess times like that autism can't be all that bad..
Tuesday, February 07, 2006
Well here we go again..
Three yrs ago we went through the ringer when Jacob was in the hospital and his bloodwork came back showing a rare metabolic disorder. Turns out it was most likely from a blend of the rotavirus wreaking havoc and just having a messed up system as many autistic kids do (After the fact I talked to another momma who said her son had similar readings that the doctor's couldn't explain. They just say "well, your kiddo has autism, he's messed up, best of luck to you, buh-bye.)
This brings us to the present day. Abby had labs drawn last Thursday to rule out any serious underlying problems causing her failure to thrive. Got a call from the doctor's office yesterday. Her alkaline phosphtase levels showed up Very high. From my google understandin, this is an enzyme secreted by the liver and bones, and a high level is indicative of some not-so-very-good things going on in the liver or bones. I took Abby to the hospital this a.m. to have a 2nd blood draw. This blood draw is supposed to 1) rule out any "fluke" readings from last week's test and 2) isolate whether the problem is coming from the liver or bones. Sooo.. we are back to the waiting game, and praying that God watches over our baby peanut and guard our hearts from leaping to scary conclusions. Please pray for little peanut.
On a cute note, Jacob is becoming protective of Abby, and calls her "Abby Kate" - and no, it's not in perfect English, but we understand him and it's so very cute. He also called her "peanut" (pretty clearly) on Sunday. He gets upset whenever we all leave the house. He runs around the house until he finds Abby, and says "Abby Kate Abby Kate.." until we have her settled in the car. Apparently he's afraid of his ditzy momma leaving her behind!
Three yrs ago we went through the ringer when Jacob was in the hospital and his bloodwork came back showing a rare metabolic disorder. Turns out it was most likely from a blend of the rotavirus wreaking havoc and just having a messed up system as many autistic kids do (After the fact I talked to another momma who said her son had similar readings that the doctor's couldn't explain. They just say "well, your kiddo has autism, he's messed up, best of luck to you, buh-bye.)
This brings us to the present day. Abby had labs drawn last Thursday to rule out any serious underlying problems causing her failure to thrive. Got a call from the doctor's office yesterday. Her alkaline phosphtase levels showed up Very high. From my google understandin, this is an enzyme secreted by the liver and bones, and a high level is indicative of some not-so-very-good things going on in the liver or bones. I took Abby to the hospital this a.m. to have a 2nd blood draw. This blood draw is supposed to 1) rule out any "fluke" readings from last week's test and 2) isolate whether the problem is coming from the liver or bones. Sooo.. we are back to the waiting game, and praying that God watches over our baby peanut and guard our hearts from leaping to scary conclusions. Please pray for little peanut.
On a cute note, Jacob is becoming protective of Abby, and calls her "Abby Kate" - and no, it's not in perfect English, but we understand him and it's so very cute. He also called her "peanut" (pretty clearly) on Sunday. He gets upset whenever we all leave the house. He runs around the house until he finds Abby, and says "Abby Kate Abby Kate.." until we have her settled in the car. Apparently he's afraid of his ditzy momma leaving her behind!
Friday, February 03, 2006
We are having another beautiful spring-like day in N. Texas. It started off cold, rainy, and dreary, but now the sun is out and it is beautful - can't help but be in a good mood. I'm trying a new recipe - pork stew with guajillo chiles. It's another recipe from my friend Cristy, so you know it's going to be good.
Chile:
7-8 dried guajillo chiles (no more than 10)
1 to 1 1/2 cups water
1 tsp salt
1 tsp oregano
3 cloves garlic
optional ingredients: 1/4 tsp thyme, 1/4 tsp cumin, 3-5 tomatillos (see below)
Clean chiles (be careful not to get much on your hands. I wear nylon gloves). Take off stem, cut down middle and remove seeds. Rinse. Put chile skins in pan of water, softly boiling, for about 30 mins, until plumped up and tender. Drain. Add to blender w/remaining ingredients. Blend very well. If too thick, add a bit more water (and no, I don't know what 'too thick' means, I'm just copying down Cristy's instructions!). Strain chile in fine mesh colander.
Tomatillo prep. Take off outer skin/peel. Put in saucepan w/boiling water. When they start to blister & pop open, they are done.
Put chile in sauce pan. Let come to soft boil. Set aside. (I didn't do this step. I lost the recipe and winged it).
Pork:
1 pork roast, diced
salt, pepper, & garlic powder to season
(I followed Cristy's suggestion and made jar with the salt, pepper, and garlic powder mixed together so I can use again in the future)
Fry pork w/seasonings in pan w/oil. Once browned, cook for about 30 mins on lower heat (about 40-45 mins total). Add chile to pork and bay leaf (opt). Simmer about 20-30 mins.
Cristy serves w/spanish rice (homemade) and beans. Can also eat on tortillas.
Knitting update - there's nothing to update - estimated finish date on Rachael's poncho sometime before Christmas 2006.
Abby update - went to the pediatrician with the 4 kids on Tuesday. Jacob has been wheezing, and his asthma medication expired. Had Abby weighed while we were there. She had lost a lb since her January appt, putting her at 15 lbs even. Did a finger prick to rule out diabetes, a urine culture to rule out a UTI. The ped suggested supplementing her with formula - nutramagen (called "liquid gold" by many because of it's cost. Judging from the other kids' food allergies the ped did not want to mess her up further by giving her one of the cheaper formulas). Nutramagen is milk-based, but the proteins have been broken down so much there's not supposed to be much left the body will react to. When I was a baby I drank progestamil (sp?) - another broken-down formula. Abby shudders when she drinks it. I heard from another mom on a board I'm on that said her doc suggested adding Karo syrup until they are more used to the taste. I'm going to try it tonight. Let's hope Abby doesn't end up with a corn allergy like Mr. Jacob and Ms. Rachael.
Went to the neurologist yesterday. No news there, which I'm relieved about. Well, actually there was some news. They weighed Abby and she is now around 14 1/2 lbs. WTH!!! I called the ped's office and they said not to panic *yet*. I took Abby to a lab for a blood draw yesterday. I'm hoping the results will be in on Mon or Tues. Between the ped's labs and the neurologist's labs (he wanted to rule out any chromosomal probs. Jacob had these tests run and was okay, so chances are the results will be similar w/Abby).
Today Abby is fussy, spitting up a lot, having very yucky diapers (not as bad as the rotavirus ones, mind you), and without much of an appetite. So what am I supposed to do??? She is NOT healthy, she is still losing weight, she is very fussy with her OT exercises, which the OT is thinking because Abby is losing weight and weak. I'm wondering "is it the formula?" "the egg yolk I gave her yesterday" "a new bug?" (her nose is running). Oh God, please hold on to my little girl, and please give us some answers and a good outcome.
Rachael update. Well, she missed 2 weeks at the church MDO program in January. They didn't call or anything. I took her back this past Wednesday - they did not know she was gone. Hmmm. Again - hmmm. Needless to say, I am praying to God for guidance on this one. And I think I'm getting some answers. I've had various professionals trucking through the house for Abby or the boys. Each has recently noted that Rachael seems to be really lagging developmentally, and engaging in a lot of self-stimulating behaviors (in autistic speak, this is called "stimming" - had flapping, eyes crossing, lining up toys in a row (ie, inappropriate play w/toys - see Jacob and/or Joshua for demonstrations). NO ONE is saying she is autistic - just lagging more and more behind her peers. They've even noted this at preschool, which is significant, because they don't know she's there half the time. They were planning to put her in a classroom w/younger kids (rather than kids her age) next year. Soooo.. after discussing the matter in depth w/Jacob's teacher Shonna, I called the school district and requested an evalation for PPCD placement (public preschool for children w/disabilities - memorize this, because I will never take the time to type it out again!). I need to return paperwork to the school district, and then they will schedule an evaluation for Rachael. She turns 3 March 6th, and would be immediately placed in a classroom, providing she meets criteria for disability.
What disability, you ask? I don't know. I'm winging this. And let me say it took some major chunks off my layers of pride to take this step. All along, Rachael has been our special blessing, the one that was going to 'make it.' It's not that we don't adore the boys, it's just such a blessing, such a gift from God, to see Rachael do things the boys have never been able to accomplish. They have been truly 'God moments.' Yes, I have taken it for granted so much, and often count on her to sit in some corner with a toy while I'm dealing with one of the boys or Abby. But her needs are pushing to the forefront these days. I'm thinking, if I can get her into a school setting w/teachers who are trained to work with delayed children, to pay attention and help Rachael along, instead of focusing on the 'typical' kids, and let the others like Rachael tag along for the ride - - this may be a good thing. So about 30-40% of me wants a PPCD placement for Rachael, and the other 60-70% wants them to say, "she's not delayed enough for services."
..gotta go. The school bus is here!
Chile:
7-8 dried guajillo chiles (no more than 10)
1 to 1 1/2 cups water
1 tsp salt
1 tsp oregano
3 cloves garlic
optional ingredients: 1/4 tsp thyme, 1/4 tsp cumin, 3-5 tomatillos (see below)
Clean chiles (be careful not to get much on your hands. I wear nylon gloves). Take off stem, cut down middle and remove seeds. Rinse. Put chile skins in pan of water, softly boiling, for about 30 mins, until plumped up and tender. Drain. Add to blender w/remaining ingredients. Blend very well. If too thick, add a bit more water (and no, I don't know what 'too thick' means, I'm just copying down Cristy's instructions!). Strain chile in fine mesh colander.
Tomatillo prep. Take off outer skin/peel. Put in saucepan w/boiling water. When they start to blister & pop open, they are done.
Put chile in sauce pan. Let come to soft boil. Set aside. (I didn't do this step. I lost the recipe and winged it).
Pork:
1 pork roast, diced
salt, pepper, & garlic powder to season
(I followed Cristy's suggestion and made jar with the salt, pepper, and garlic powder mixed together so I can use again in the future)
Fry pork w/seasonings in pan w/oil. Once browned, cook for about 30 mins on lower heat (about 40-45 mins total). Add chile to pork and bay leaf (opt). Simmer about 20-30 mins.
Cristy serves w/spanish rice (homemade) and beans. Can also eat on tortillas.
Knitting update - there's nothing to update - estimated finish date on Rachael's poncho sometime before Christmas 2006.
Abby update - went to the pediatrician with the 4 kids on Tuesday. Jacob has been wheezing, and his asthma medication expired. Had Abby weighed while we were there. She had lost a lb since her January appt, putting her at 15 lbs even. Did a finger prick to rule out diabetes, a urine culture to rule out a UTI. The ped suggested supplementing her with formula - nutramagen (called "liquid gold" by many because of it's cost. Judging from the other kids' food allergies the ped did not want to mess her up further by giving her one of the cheaper formulas). Nutramagen is milk-based, but the proteins have been broken down so much there's not supposed to be much left the body will react to. When I was a baby I drank progestamil (sp?) - another broken-down formula. Abby shudders when she drinks it. I heard from another mom on a board I'm on that said her doc suggested adding Karo syrup until they are more used to the taste. I'm going to try it tonight. Let's hope Abby doesn't end up with a corn allergy like Mr. Jacob and Ms. Rachael.
Went to the neurologist yesterday. No news there, which I'm relieved about. Well, actually there was some news. They weighed Abby and she is now around 14 1/2 lbs. WTH!!! I called the ped's office and they said not to panic *yet*. I took Abby to a lab for a blood draw yesterday. I'm hoping the results will be in on Mon or Tues. Between the ped's labs and the neurologist's labs (he wanted to rule out any chromosomal probs. Jacob had these tests run and was okay, so chances are the results will be similar w/Abby).
Today Abby is fussy, spitting up a lot, having very yucky diapers (not as bad as the rotavirus ones, mind you), and without much of an appetite. So what am I supposed to do??? She is NOT healthy, she is still losing weight, she is very fussy with her OT exercises, which the OT is thinking because Abby is losing weight and weak. I'm wondering "is it the formula?" "the egg yolk I gave her yesterday" "a new bug?" (her nose is running). Oh God, please hold on to my little girl, and please give us some answers and a good outcome.
Rachael update. Well, she missed 2 weeks at the church MDO program in January. They didn't call or anything. I took her back this past Wednesday - they did not know she was gone. Hmmm. Again - hmmm. Needless to say, I am praying to God for guidance on this one. And I think I'm getting some answers. I've had various professionals trucking through the house for Abby or the boys. Each has recently noted that Rachael seems to be really lagging developmentally, and engaging in a lot of self-stimulating behaviors (in autistic speak, this is called "stimming" - had flapping, eyes crossing, lining up toys in a row (ie, inappropriate play w/toys - see Jacob and/or Joshua for demonstrations). NO ONE is saying she is autistic - just lagging more and more behind her peers. They've even noted this at preschool, which is significant, because they don't know she's there half the time. They were planning to put her in a classroom w/younger kids (rather than kids her age) next year. Soooo.. after discussing the matter in depth w/Jacob's teacher Shonna, I called the school district and requested an evalation for PPCD placement (public preschool for children w/disabilities - memorize this, because I will never take the time to type it out again!). I need to return paperwork to the school district, and then they will schedule an evaluation for Rachael. She turns 3 March 6th, and would be immediately placed in a classroom, providing she meets criteria for disability.
What disability, you ask? I don't know. I'm winging this. And let me say it took some major chunks off my layers of pride to take this step. All along, Rachael has been our special blessing, the one that was going to 'make it.' It's not that we don't adore the boys, it's just such a blessing, such a gift from God, to see Rachael do things the boys have never been able to accomplish. They have been truly 'God moments.' Yes, I have taken it for granted so much, and often count on her to sit in some corner with a toy while I'm dealing with one of the boys or Abby. But her needs are pushing to the forefront these days. I'm thinking, if I can get her into a school setting w/teachers who are trained to work with delayed children, to pay attention and help Rachael along, instead of focusing on the 'typical' kids, and let the others like Rachael tag along for the ride - - this may be a good thing. So about 30-40% of me wants a PPCD placement for Rachael, and the other 60-70% wants them to say, "she's not delayed enough for services."
..gotta go. The school bus is here!
Subscribe to:
Posts (Atom)