One month into speech therapy and Hailey is more willing to try to say the correct words when prompted. Two syllable words followed by another word is what she currently struggles with the most, so it is great that she is trying (this was taped on her 5th or 6th attempt). They said practice is what will eventually get her to say these words spontaneously. Personally I count any progress at all as a victory! Way to go, Hailey!
Saturday, December 31, 2011
Thursday, December 22, 2011
Wednesday, December 21, 2011
Update On Hailey
Poor Hailey has had quite a few diagnoses come through in the last year. I would be lying if I didn't say I feel a little overwhelmed by all of it. She's really only gone through one other issue and that was the torticollis/plagiocephaly when she was an infant. That was easy because the two issues were connected, had a simple explanation (traumatic birth), and required a simple fix (daily stretches). She was close to needing a helmet but we didn't get to that stage and even though the doctor was a little concerned because she felt Hailey's features were starting to slightly distort, once we fixed the torticollis, the plagiocephaly cleared right up with no lasting problems. Although the first three are linked, these new diagnoses are not going to be as simple.
Her first diagnosis came this spring: severe eczema. The issue with this problem is that there can be a multitude of issues that cause this condition, or it can be nothing. That means that investigating the issue, while possibly worthy, could also leave us empty-handed. The treatment includes topical steroids and oral anti-itch medicine, which I am not fond of but she is so miserable that we do it anyway. She can grow out of this condition. Most kids grow out of it by 5-7.
While investigating, we started with the possibility that made the most sense: environmental allergies. This made the most sense because her eczema seemed to come and go with the seasons last year. When eczema is usually at its worst (winter), it was completely healed. The second that the pollen count went up, it started again. The allergist did indeed give us the second diagnosis: environmental allergies. We found her to be allergic to pollen, dust, ragweed, some trees, some grasses, cats, and dogs. We don't have pets and I try to keep the dust to a minimum. She obviously can't stop breathing so that was the extent of what we could do. Any reasonable suggestion I found, we tried. This is not a condition she will grow out of and in fact the allergist said this gave her a 50% chance of growing into asthma. Regardless, it seemed linked to the eczema, and we spent all summer in a losing battle against the eczema.
We were referred to a pediatric dermatologist at this point. The dermatologist asked for a food allergy testing because she said kids this young rarely have environmental allergies, and if she has those, she probably also has food allergies. Since the allergist had been pushing for it anyway, we finally conceded to the food allergy testing. We did the testing and walked away with her third diagnosis for the year: food allergies. The test showed soy, bananas, green beans, carrots, cucumbers, mustard, scallops, oysters, and clams. Now we had something that we could eliminate. We eliminated everything except soy with no issues but continue to struggle to eliminate the soy completely because it is in EVERYTHING. Seriously, soy farmers can not be hurting. Anyway, she should most likely outgrow these food allergies (with the possible exception of the shellfish, although she has never had any of those) and elimination is the only way to treat them. The (mostly complete) elimination seems to have helped, but the environmental allergies died off too so who knows which caused the decrease in eczema flares but I am happy to be using less prescription medication at the moment. It continues to be an ongoing battle but the more we learn, the more we can hopefully help.
Her last diagnosis came today: mild childhood apraxia of speech. She has been having some speech issues pretty much since she started talking, but she was always so borderline, it was difficult to determine if she needed help or not. It always felt like something that could go either way - either it could get worse or it could get significantly better and she would catch up. Well, we finally decided to have her tested and as you read before, they did find her slightly delayed. Today, during her second speech therapy session, the therapist and I were talking after Hailey was really struggling to put together two words when the first word had two syllables. The therapist said for the second time that she really feels it is a motor sync issue - her mouth and her brain aren't syncing up. She said there is a test she can do to be sure, but she thinks that it is most likely childhood apraxia of speech. The good news about this is that Hailey has a mild to mild-moderate case, this particular issue does not lead to later issues, and this issue is solvable with practice. In other words, Hailey is perfectly capable of saying the words, she just has to work harder to practice her words so she knows them well enough to call them up without a glitch between her brain and mouth. This glitch is causing her to drop the end consonants and to struggle putting correct sentences together because it is easier to just drop when that information isn't right there. The bad news is that kids with this issue aren't like other speech therapy kids - they don't just learn a sound and then can repeat it from there on out. She may master the "sh" sound in one word and still not be able to use it in another word. There is a chance that we will have to work with her individually on many, many words. The other bad news is that the therapist basically said there is no way she will qualify for speech therapy through the school in 3 months. She is not nearly delayed enough and kids who are much more delayed than she is don't qualify because the school only cares about school issues. If she can communicate, even if it is hard to understand, she won't make it. She did say that private therapy is available and she could give us a recommendation if Hailey doesn't catch up by her third birthday. She also said that she had put through the work order to switch Hailey to weekly therapy, which hopefully gets approved and goes through sooner rather than later.
I am thankful for all the doctors and therapists who put in all the time to help come up with all these diagnoses, even if they do feel daunting at the moment. Now that we know what we are dealing with, we can formulate a plan and hopefully help our baby girl. My Christmas wish is that by this time next year, she is speaking clearly and her eczema is under control. Here's hoping!
Her first diagnosis came this spring: severe eczema. The issue with this problem is that there can be a multitude of issues that cause this condition, or it can be nothing. That means that investigating the issue, while possibly worthy, could also leave us empty-handed. The treatment includes topical steroids and oral anti-itch medicine, which I am not fond of but she is so miserable that we do it anyway. She can grow out of this condition. Most kids grow out of it by 5-7.
While investigating, we started with the possibility that made the most sense: environmental allergies. This made the most sense because her eczema seemed to come and go with the seasons last year. When eczema is usually at its worst (winter), it was completely healed. The second that the pollen count went up, it started again. The allergist did indeed give us the second diagnosis: environmental allergies. We found her to be allergic to pollen, dust, ragweed, some trees, some grasses, cats, and dogs. We don't have pets and I try to keep the dust to a minimum. She obviously can't stop breathing so that was the extent of what we could do. Any reasonable suggestion I found, we tried. This is not a condition she will grow out of and in fact the allergist said this gave her a 50% chance of growing into asthma. Regardless, it seemed linked to the eczema, and we spent all summer in a losing battle against the eczema.
We were referred to a pediatric dermatologist at this point. The dermatologist asked for a food allergy testing because she said kids this young rarely have environmental allergies, and if she has those, she probably also has food allergies. Since the allergist had been pushing for it anyway, we finally conceded to the food allergy testing. We did the testing and walked away with her third diagnosis for the year: food allergies. The test showed soy, bananas, green beans, carrots, cucumbers, mustard, scallops, oysters, and clams. Now we had something that we could eliminate. We eliminated everything except soy with no issues but continue to struggle to eliminate the soy completely because it is in EVERYTHING. Seriously, soy farmers can not be hurting. Anyway, she should most likely outgrow these food allergies (with the possible exception of the shellfish, although she has never had any of those) and elimination is the only way to treat them. The (mostly complete) elimination seems to have helped, but the environmental allergies died off too so who knows which caused the decrease in eczema flares but I am happy to be using less prescription medication at the moment. It continues to be an ongoing battle but the more we learn, the more we can hopefully help.
Her last diagnosis came today: mild childhood apraxia of speech. She has been having some speech issues pretty much since she started talking, but she was always so borderline, it was difficult to determine if she needed help or not. It always felt like something that could go either way - either it could get worse or it could get significantly better and she would catch up. Well, we finally decided to have her tested and as you read before, they did find her slightly delayed. Today, during her second speech therapy session, the therapist and I were talking after Hailey was really struggling to put together two words when the first word had two syllables. The therapist said for the second time that she really feels it is a motor sync issue - her mouth and her brain aren't syncing up. She said there is a test she can do to be sure, but she thinks that it is most likely childhood apraxia of speech. The good news about this is that Hailey has a mild to mild-moderate case, this particular issue does not lead to later issues, and this issue is solvable with practice. In other words, Hailey is perfectly capable of saying the words, she just has to work harder to practice her words so she knows them well enough to call them up without a glitch between her brain and mouth. This glitch is causing her to drop the end consonants and to struggle putting correct sentences together because it is easier to just drop when that information isn't right there. The bad news is that kids with this issue aren't like other speech therapy kids - they don't just learn a sound and then can repeat it from there on out. She may master the "sh" sound in one word and still not be able to use it in another word. There is a chance that we will have to work with her individually on many, many words. The other bad news is that the therapist basically said there is no way she will qualify for speech therapy through the school in 3 months. She is not nearly delayed enough and kids who are much more delayed than she is don't qualify because the school only cares about school issues. If she can communicate, even if it is hard to understand, she won't make it. She did say that private therapy is available and she could give us a recommendation if Hailey doesn't catch up by her third birthday. She also said that she had put through the work order to switch Hailey to weekly therapy, which hopefully gets approved and goes through sooner rather than later.
I am thankful for all the doctors and therapists who put in all the time to help come up with all these diagnoses, even if they do feel daunting at the moment. Now that we know what we are dealing with, we can formulate a plan and hopefully help our baby girl. My Christmas wish is that by this time next year, she is speaking clearly and her eczema is under control. Here's hoping!
Friday, December 16, 2011
A Strange Sight!
In December, at least!
We saw this while dropping Hannah off for kindergarten! I am glad I stopped and took the picture at her actual school because it was gone almost as quickly as it appeared. Beautiful!
We saw this while dropping Hannah off for kindergarten! I am glad I stopped and took the picture at her actual school because it was gone almost as quickly as it appeared. Beautiful!Thursday, December 15, 2011
Preparing For Christmas
We were out of town for Thanksgiving and have been really busy this season, so we hadn't had a chance to put up our tree yet. It has also been so unseasonably warm, it hasn't felt much like the holidays anyway but we finally got around to buying and then trimming our tree.
Hannah helped by putting hangers on the ornaments (unfortunately she tripped and broke this ornament just a few seconds later - this was an ornament that Rob and I got on our European trip back in college):
Hailey helped by hanging the ornaments:
Daddy and Hannah hanging some more ornaments:
And putting the angel on top of the tree:
Hannah helped by putting hangers on the ornaments (unfortunately she tripped and broke this ornament just a few seconds later - this was an ornament that Rob and I got on our European trip back in college):
Hailey helped by hanging the ornaments:
Daddy and Hannah hanging some more ornaments:
And putting the angel on top of the tree:
Ready for Santa!
Merry Christmas!!!
Wednesday, December 7, 2011
Hailey's First Speech Therapy
Her first appointment went well! I think the speech therapist did the same thing a lot of people in her field do - she walked in and Hailey immediately began with some of her words and the therapist was like "she talks pretty well." She even asked if Hailey was getting other therapies (I think she thought Hailey wasn't delayed enough to only be receiving one therapy). However, since she actually knows what she is doing, she did catch on to the problems by the end. She started saying "oh she really does drop the end of every word" and "does she just say the same phrases over and over again?" and "she really blocks her words a lot, doesn't she?" She also heard that Hailey isn't making sentences really. The therapist kept saying "can you say "I want the ball?" and Hailey would say "ball" and the therapist would repeat and the most she could ever get Hailey to say was "want ball" unless she broke it down word by word to repeat. Even then, once Hailey said it word by word, the therapist would say "I want the ball" and Hailey would say "ball!" LOL Anyway, she thinks it is actually not a speech delay but a brain to mouth connection issue of some sort. She thinks Hailey has the ability to say the words because she says them if they are broken down but doesn't say them correctly independently. Basically, she drops the end of the word because it is easier and she is struggling to get the words out. She said that also accounts for her putting "a" in a lot of her phrases (that aren't learned phrases from Hannah) - there is a brief delay between her brain and her mouth. She thinks Hailey is trying and even understands that she should be saying more, which accounts for putting "ma" and "please" on to a lot of 2 word phrases. The therapist thinks it is just a matter of practice to solidify that connection and is even going to try to get Hailey bumped up to weekly therapy because she feels that this problem could be correctable by age 3, which is something I would really like if possible.
I was very pleased with the first meeting!
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