So my response to the stim medications has thus far been underwhelming at best. I have only 9 measurable follicles (potential eggs) as of today (after 5 days of stimming) and my lining is only at a 3 (my lining is at a 2 during my period, so that will give you an idea for a baby to implant it needs to be at about an 8). So I am feeling a little down about it. In looking back at the cycle that gave us N and Z (after the same amount of days stimming) I had 15 measurable follicles and my lining was at an 8. They increased my dose on Monday when I had only 5 measurable follicles and lining at a 3. I go back again on Friday and I am hopeful that there will be a better response. Not that 9 eggs would be horrible, but I would prefer more. With our last cycle we had 14 eggs recovered, 12 were mature, but only 7 fertilized. Of those 7 only 1 made it to blast (N) the other embryo was of a lower grade (no idea what grade) and was "eh" (Z). So obviously I know that it doesn't take a perfect embryo to turn into a baby.........but knowing that only 2 of ours made it last time makes me worry that with only 9 (thus far) we might have a problem come transfer day. So I am keeping my fingers crossed, relying upon my Cysters to keep me calm and, hoping I get a pleasant surprise on Friday.
N had a joint therapy session with his OT and PT today and they worked on crawling with him. He so wants to crawl! He has been moving himself around in a circle for a few weeks now and I know that at some point it is going to click that he can go in a straight line too. I cannot wait for that day! The picture in my mind of both of my boys being able to go where they want and do what they want brings tears to my eyes. I always feel awful that Z can follow me in the kitchen, open cabinets to pull stuff out and just generally assert his independence whereas N is just stuck where I put him. (Well he can roll places and move around in a circle, but it's not the same). I feel like N gets left out and it bothers me, a lot.
I ordered (upon the recommendation of Z's PT) orthotics for Z. They are from this site www.cascadedafo.com and we got him the "cricket". They aren't custom orthotics but Z's PT feels that these might be just what Z needs to finally take off walking. I hope so. I would love to be able to take my boys out for a walk and let them both walk. But until Z is walking on his own, I can't because N needs both my hands for support. Of course once N's gait trainer arrives we will really be able to go for walks!
Wednesday, November 9, 2011
Friday, November 4, 2011
Moving Forward
Tonight I FINALLY get to start stims! I am very excited about that. As referenced previously, because my DH will be traveling overseas next week I needed to stay on the Lupron (suppression medication) for an extra week but now I can finally start to stim and then we will hopefully be pregnant again. I went in for the always wonderful wakeup of bloodwork and transvaginal ultrasound this morning to make sure everything was good to go, and now I wait for a phone call from the doctor giving me my instructions for tonight's stimulation injection. I have also started drinking my gatorade so as to prevent OHSS. (very painful, very bad result of over stimulating).
We also had an appointment with the developmental pediatrician today and for once I didn't leave the appointment crying. She was so impressed with how well N is doing and commented that she has hopes he will walk. I think at the last two appointments he was so young that it was really hard for her to have a good sense of what he could/would do and I picked up on that, she never said anything depressing or horrible to hear, but I think I just felt that vibe. Not that it has prevented me from being positive about N's progress and potential, but for that day and a few days after the appointment it was really hard for me. She did feel that N is most likely a Spastic Quad, meaning that all four of his limbs are affected. I am not entirely sure that this is an accurate diagnosis, but I don't know if there is a true accurate diagnosis for N. This is because his legs are definitely affect, his left arm is affected, but his right isn't and his face doesn't seem to be either. Not that any of it really matters, it doesn't change our therapies, goals, or how we feel so in the end I don't care what label they give him. He really showed off for the doctor today with his "ring" sitting (ie sitting with his feet touching as opposed to legs straight out in front of him), moving around in a circle on his belly, rolling, and putting blocks into a cup and taking them out again.
Z did really well too and the only comment she had about him was that his fine motor skills seemed to be lagging again and perhaps OT should be restarted. I'll talk to N's OT (who also used to treat Z until it was determined he no longer qualified b/c he had caught up) and see what she thinks. But I do wonder if some of it isn't my fault/lack of clarity on when things should be done. For example, the doctor handed Z a crayon today to ask him to draw. He made a mark on the paper, but he had NEVER held a crayon before. I had read that crayons/coloring was a skill/activity for children around 18 months, my boys are 17 1/2 months chronologically but only 15 1/2 months adjusted age. So I haven't given them crayons yet (N exhibited exactly why when it was his turn and the crayon went right to his mouth, he is working on molars!). Perhaps I should have, but I really wish there was some clarity on stuff like that so that I was prepared!
So I will be getting some crayons and paper I suppose so that the boys can learn to draw. DH and I stopped at the toy store on the way home from the doctor (where I forgot to get crayons!) and picked up some of those wooden puzzles with the "handle" on the pieces. I figured those would be good for fine motor skills as well. I would happily take suggestions on other activities that your child is doing (or was doing) around 15-18 months. Did you introduce crayons? Playdough? What other things did you utilize to work on fine motor skills? Of course I will ask the OT for some suggestions as well, but I find that other mommy's tend to have some really great ideas and I will take all the help I can get!
We also had an appointment with the developmental pediatrician today and for once I didn't leave the appointment crying. She was so impressed with how well N is doing and commented that she has hopes he will walk. I think at the last two appointments he was so young that it was really hard for her to have a good sense of what he could/would do and I picked up on that, she never said anything depressing or horrible to hear, but I think I just felt that vibe. Not that it has prevented me from being positive about N's progress and potential, but for that day and a few days after the appointment it was really hard for me. She did feel that N is most likely a Spastic Quad, meaning that all four of his limbs are affected. I am not entirely sure that this is an accurate diagnosis, but I don't know if there is a true accurate diagnosis for N. This is because his legs are definitely affect, his left arm is affected, but his right isn't and his face doesn't seem to be either. Not that any of it really matters, it doesn't change our therapies, goals, or how we feel so in the end I don't care what label they give him. He really showed off for the doctor today with his "ring" sitting (ie sitting with his feet touching as opposed to legs straight out in front of him), moving around in a circle on his belly, rolling, and putting blocks into a cup and taking them out again.
Z did really well too and the only comment she had about him was that his fine motor skills seemed to be lagging again and perhaps OT should be restarted. I'll talk to N's OT (who also used to treat Z until it was determined he no longer qualified b/c he had caught up) and see what she thinks. But I do wonder if some of it isn't my fault/lack of clarity on when things should be done. For example, the doctor handed Z a crayon today to ask him to draw. He made a mark on the paper, but he had NEVER held a crayon before. I had read that crayons/coloring was a skill/activity for children around 18 months, my boys are 17 1/2 months chronologically but only 15 1/2 months adjusted age. So I haven't given them crayons yet (N exhibited exactly why when it was his turn and the crayon went right to his mouth, he is working on molars!). Perhaps I should have, but I really wish there was some clarity on stuff like that so that I was prepared!
So I will be getting some crayons and paper I suppose so that the boys can learn to draw. DH and I stopped at the toy store on the way home from the doctor (where I forgot to get crayons!) and picked up some of those wooden puzzles with the "handle" on the pieces. I figured those would be good for fine motor skills as well. I would happily take suggestions on other activities that your child is doing (or was doing) around 15-18 months. Did you introduce crayons? Playdough? What other things did you utilize to work on fine motor skills? Of course I will ask the OT for some suggestions as well, but I find that other mommy's tend to have some really great ideas and I will take all the help I can get!
Saturday, October 22, 2011
hanging in
It's day 9 of Lupron and so far, not too bad. Lupron is the medication used in IVF to shut your system down. Think menopause, that's kind of what it does hot flashes and all! I go in Monday for bloodwork and ultrasound to ensure that my body is totally shut down so that we can start stimming. Either way I won't be starting stimming until November 4th as DH is out of town that week so if I started stimming on 10/28 we would risk DH not being here for the retrieval day and that is not an option. I have had a few hot flashes and a few flashes of pain in my head (not lasting long enough to count as a headache) and I am a little more tired than usual.
My boys are doing well. Z has learned to climb the stairs. Its a double edged skill as it will be great when I am stimming and don't want to carry my almost 23 pound toddler up the stairs, but on the other hand I have to remember to put the gate across or he scoots himself up if I turn my back for just a second!
N is trying so hard to crawl on his belly. He moves his legs a little but doesn't quite have the coordination down yet to move the leg and pull to move himself. He is really close though and I am hoping by Thanksgiving that he will be able to military crawl to get himself around.
I have been thinking a lot about our home and how to make it work for N. We live in a two story home that while not tiny, isn't what I would call large. Its a good size for us, and I love this house, but I worry about how N will get around and how to make it accessible for him. Obviously he is working hard and we are hopeful that he will eventually walk either on his own, or with a walker/crutches/etc. But we know he will start with a gait trainer, in fact its in the process of being ordered. Our living room and dining room are essentially open to each other (there is a doorway but its a huge archway as opposed to a door) but the doorways into the kitchen are a big problem. The one doorway is narrower than all our other doorways, and the other doorway is wide enough but as soon as you get through it has a radiator and two counters. Then there is the playroom we have for them, which has a step down into it and its a long room but narrow. We had our contractor here last week to give us some options. I felt a little better afterwords as he said he could widen the narrow doorway, and make us a ramp into the playroom if we want it. DH and I have also started looking at smaller entertainment centers to hopefully allow more space to angle himself through the doorway well, and we are going to get rid of the kitchen table in our kitchen and get a small cart/island instead (we don't eat in there anyway as it was fine for two people, not so much two people and two highchairs!). As for the playroom, I don't know that the room itself will work with the gait trainer so I think we will pass on the ramp for now and let him play in the playroom while not in the gait trainer.
Ultimately we want to add on to our home adding a family room, making our kitchen bigger and adding another bedroom on the 2nd floor. I would love to move to a one story house, but as many people are, we are *slightly* underwater here and while I think we could get enough to cover our mortgage, it wouldn't cover real estate fees, and would give us nothing as a down payment for another home. (Considering I've heard some mortgage companies are looking for 30-40% down now..........yea, who has that kind of money???). I am trying to make the best of it, but there are days I just break down and cry. I want our home to be a safe and secure place for all my children and I worry that N will feel limited or left out because we have a two story home and we don't know yet if he will be able to climb those stairs. Can you tell I worry a lot? I think it comes naturally as soon as you get pregnant, and it doubles in intensity when you have a child with special needs.
My boys are doing well. Z has learned to climb the stairs. Its a double edged skill as it will be great when I am stimming and don't want to carry my almost 23 pound toddler up the stairs, but on the other hand I have to remember to put the gate across or he scoots himself up if I turn my back for just a second!
N is trying so hard to crawl on his belly. He moves his legs a little but doesn't quite have the coordination down yet to move the leg and pull to move himself. He is really close though and I am hoping by Thanksgiving that he will be able to military crawl to get himself around.
I have been thinking a lot about our home and how to make it work for N. We live in a two story home that while not tiny, isn't what I would call large. Its a good size for us, and I love this house, but I worry about how N will get around and how to make it accessible for him. Obviously he is working hard and we are hopeful that he will eventually walk either on his own, or with a walker/crutches/etc. But we know he will start with a gait trainer, in fact its in the process of being ordered. Our living room and dining room are essentially open to each other (there is a doorway but its a huge archway as opposed to a door) but the doorways into the kitchen are a big problem. The one doorway is narrower than all our other doorways, and the other doorway is wide enough but as soon as you get through it has a radiator and two counters. Then there is the playroom we have for them, which has a step down into it and its a long room but narrow. We had our contractor here last week to give us some options. I felt a little better afterwords as he said he could widen the narrow doorway, and make us a ramp into the playroom if we want it. DH and I have also started looking at smaller entertainment centers to hopefully allow more space to angle himself through the doorway well, and we are going to get rid of the kitchen table in our kitchen and get a small cart/island instead (we don't eat in there anyway as it was fine for two people, not so much two people and two highchairs!). As for the playroom, I don't know that the room itself will work with the gait trainer so I think we will pass on the ramp for now and let him play in the playroom while not in the gait trainer.
Ultimately we want to add on to our home adding a family room, making our kitchen bigger and adding another bedroom on the 2nd floor. I would love to move to a one story house, but as many people are, we are *slightly* underwater here and while I think we could get enough to cover our mortgage, it wouldn't cover real estate fees, and would give us nothing as a down payment for another home. (Considering I've heard some mortgage companies are looking for 30-40% down now..........yea, who has that kind of money???). I am trying to make the best of it, but there are days I just break down and cry. I want our home to be a safe and secure place for all my children and I worry that N will feel limited or left out because we have a two story home and we don't know yet if he will be able to climb those stairs. Can you tell I worry a lot? I think it comes naturally as soon as you get pregnant, and it doubles in intensity when you have a child with special needs.
Tuesday, October 18, 2011
Into the fire........
Sorry its been so very long, I think about things I want to post about and then forget to post! I would blame mommy brain......but that seems cliche so I won't!
A lot of things have been happening here. Z is still not walking, however he has taken a few steps here and there and we are hopeful that one of these days he is just going to take off. I am sure that once he has taken off, I will regret those words but in the meantime we are hopeful. I had thought he had until 18 months to start walking, but apparently its really only 15 months before they get worried and we have hit the 15 month mark. Because you know, this mommy didn't have enough to worry about.
N is doing really well. His hands seem to be loosening up a bit more and only seem slightly involved at this point. We have been seeing an oral/motor specialist for a few months now and N is finally able to drink from a straw and now has the independence to drink all by himself. It is so wonderful to see the look of pride and satisfaction on his face as he drinks his milk all by himself! I am also hopeful it will allow him to gain some more weight. Z weighs 4 pounds more than N and I think that has a lot to do with their milk intake since they both eat and feed themselves the same foods. We are also in the process of ordering his gait trainer. He has been doing really well with the one they have at the hospital where he receives PT each week. We had tried him in it in June and he just wasn't quite ready, but two weeks ago we tried it again and he just took off. I was so very proud of him and he was most definitely proud of himself. I don't expect to to receive it much before Christmas but the fact that the process has been started and my little boy will finally be able to move around by himself in a method other than rolling is so very thrilling. We are still working on crawling with him, and I am hopeful that maybe by the end of the year he will be able to at least military crawl. I hate it that Z can crawl into the kitchen or wherever else I am if he wants to and be with me, or go into the cabinets, or just have some freedom and N is stuck wherever we put him. Yes he can roll and it has given him some sense of freedom and mobility, but it's just not the same. I want my little boy to crawl...........amazing how things that most parents think are "little" mean the world to a parent of a child with special needs.
I finally got Early Intervention to give us speech therapy. It has taken a lot of pushing, but both N and Z were evaluated last month and both deemed to be (shocking to no one in this household I can assure you) more than 50% delayed . So both boys will now get speech therapy one time per week. I really wanted twice per week, but the compromise was once a week for now and in three months we would sit down again and re-evaluate how things are going and hopefully add in that second weekly session that I think they need. It probably seems crazy to be getting speech therapy for two 17 month olds (15 months adjusted) but my boys haven't said "mama" they haven't said "dada", they don't say much of anything. Sure they babble and make noise, but they don't talk, they don't say words. I don't understand the concept of "well lets wait until they turn 2 and see how its going". Why? Why in gods name would we wait until they are two to give them any assistance in speech? If most children say a few words, or at the very least "mama" or "dada" by the time they are 12 months old, why would you wait another 12 months to intervene? It makes no sense to me at all, feelings I made very clear to our case manager. I don't think she likes me very much, but I am looking out for the best interests of my kids not to make more friends.
And in other news............we have started another round of IVF! Yup, we are totally crazy. No, we really aren't but I am quite sure that most people will think we are. We have always wanted 3 or 4 children and although we were planning on waiting another year there are some things that have required otherwise. We have wonderful insurance coverage through DH's employer, coverage that allows us IVF coverage. Unfortunately this coverage only gives us 60 sessions per year of therapy (combined speech/OT/PT). Now, that doesn't matter much right now because almost all of N's therapy is done through early intervention. Of course without the session limit we would be able to submit the co-pay we make for reimbursement, but its a manageable monthly payment and so we are doing ok without that. However, once N turns 3 he graduates into the school program, and while they therapy will then be done through the school, I'm not sure if it will be enough and I may want to get him more private therapy. In order to do that, we would need to change the plan we currently have and the plan we would need to change to does not have any IVF coverage and we would have to make that switch next November. Seems like a long way away, but it's really not not in infertility world at least. So I started my lupron shots last Friday and we are hoping for a retrieval date of November 14th. It still kills me some days the amount of people and decisions required for DH and I to decide to have another baby, something that really should be just a decision between DH and I. But, I try to accept that it is our life and on most days I do ok with it.
Life is never dull in this household!
A lot of things have been happening here. Z is still not walking, however he has taken a few steps here and there and we are hopeful that one of these days he is just going to take off. I am sure that once he has taken off, I will regret those words but in the meantime we are hopeful. I had thought he had until 18 months to start walking, but apparently its really only 15 months before they get worried and we have hit the 15 month mark. Because you know, this mommy didn't have enough to worry about.
N is doing really well. His hands seem to be loosening up a bit more and only seem slightly involved at this point. We have been seeing an oral/motor specialist for a few months now and N is finally able to drink from a straw and now has the independence to drink all by himself. It is so wonderful to see the look of pride and satisfaction on his face as he drinks his milk all by himself! I am also hopeful it will allow him to gain some more weight. Z weighs 4 pounds more than N and I think that has a lot to do with their milk intake since they both eat and feed themselves the same foods. We are also in the process of ordering his gait trainer. He has been doing really well with the one they have at the hospital where he receives PT each week. We had tried him in it in June and he just wasn't quite ready, but two weeks ago we tried it again and he just took off. I was so very proud of him and he was most definitely proud of himself. I don't expect to to receive it much before Christmas but the fact that the process has been started and my little boy will finally be able to move around by himself in a method other than rolling is so very thrilling. We are still working on crawling with him, and I am hopeful that maybe by the end of the year he will be able to at least military crawl. I hate it that Z can crawl into the kitchen or wherever else I am if he wants to and be with me, or go into the cabinets, or just have some freedom and N is stuck wherever we put him. Yes he can roll and it has given him some sense of freedom and mobility, but it's just not the same. I want my little boy to crawl...........amazing how things that most parents think are "little" mean the world to a parent of a child with special needs.
I finally got Early Intervention to give us speech therapy. It has taken a lot of pushing, but both N and Z were evaluated last month and both deemed to be (shocking to no one in this household I can assure you) more than 50% delayed . So both boys will now get speech therapy one time per week. I really wanted twice per week, but the compromise was once a week for now and in three months we would sit down again and re-evaluate how things are going and hopefully add in that second weekly session that I think they need. It probably seems crazy to be getting speech therapy for two 17 month olds (15 months adjusted) but my boys haven't said "mama" they haven't said "dada", they don't say much of anything. Sure they babble and make noise, but they don't talk, they don't say words. I don't understand the concept of "well lets wait until they turn 2 and see how its going". Why? Why in gods name would we wait until they are two to give them any assistance in speech? If most children say a few words, or at the very least "mama" or "dada" by the time they are 12 months old, why would you wait another 12 months to intervene? It makes no sense to me at all, feelings I made very clear to our case manager. I don't think she likes me very much, but I am looking out for the best interests of my kids not to make more friends.
And in other news............we have started another round of IVF! Yup, we are totally crazy. No, we really aren't but I am quite sure that most people will think we are. We have always wanted 3 or 4 children and although we were planning on waiting another year there are some things that have required otherwise. We have wonderful insurance coverage through DH's employer, coverage that allows us IVF coverage. Unfortunately this coverage only gives us 60 sessions per year of therapy (combined speech/OT/PT). Now, that doesn't matter much right now because almost all of N's therapy is done through early intervention. Of course without the session limit we would be able to submit the co-pay we make for reimbursement, but its a manageable monthly payment and so we are doing ok without that. However, once N turns 3 he graduates into the school program, and while they therapy will then be done through the school, I'm not sure if it will be enough and I may want to get him more private therapy. In order to do that, we would need to change the plan we currently have and the plan we would need to change to does not have any IVF coverage and we would have to make that switch next November. Seems like a long way away, but it's really not not in infertility world at least. So I started my lupron shots last Friday and we are hoping for a retrieval date of November 14th. It still kills me some days the amount of people and decisions required for DH and I to decide to have another baby, something that really should be just a decision between DH and I. But, I try to accept that it is our life and on most days I do ok with it.
Life is never dull in this household!
Friday, August 12, 2011
The Green Eyed Monster
I would like to think that I could simply be happy for people who "just get pregnant" and then I hear about a friend who is and the jealousy starts. I have no right to be jealous, wishing for what someone else has doesn't mean just the good parts of their life but the bad too, but when I hear about someone who is able to have sex with their husband and get pregnant, well that's hard for me.
I would love to be able to get pregnant the old fashioned way. Some romance, love, and maybe even an orgasm, lol. Instead I get needles, doctors, and the ever sexy trans vaginal ultrasound four to five times a week. (Well when we are cycling that is, we aren't at present and don't plan too until next summer at least) Having to use fertility drugs, doctors, and procedures takes all the love and romance out of having a baby. Yes you still (hopefully) get a baby - or two- out of the deal, but it's just not the same. You can't just "decide" to have another baby. It involves testing, blood work (seriously they take vials and vials of blood), ultrasounds, more testing, meetings with the doctor, and the every wonderful "sample in a cup" provided by your DH. I envy the people who can say let's have another baby and have sex to do it...........on the other hand in my house sex is just for fun, so I guess there are benefits to that!
I would love to be able to get pregnant the old fashioned way. Some romance, love, and maybe even an orgasm, lol. Instead I get needles, doctors, and the ever sexy trans vaginal ultrasound four to five times a week. (Well when we are cycling that is, we aren't at present and don't plan too until next summer at least) Having to use fertility drugs, doctors, and procedures takes all the love and romance out of having a baby. Yes you still (hopefully) get a baby - or two- out of the deal, but it's just not the same. You can't just "decide" to have another baby. It involves testing, blood work (seriously they take vials and vials of blood), ultrasounds, more testing, meetings with the doctor, and the every wonderful "sample in a cup" provided by your DH. I envy the people who can say let's have another baby and have sex to do it...........on the other hand in my house sex is just for fun, so I guess there are benefits to that!
Wednesday, August 3, 2011
Annual meeting
Today was the annual meeting for the boys Early Intervention therapies. All in all it was a good meeting.
N was increased to OT 6 times per month (he was at once a week), his PT remained the same (twice a week), DI remained the same (once a week) and his DI is doing the paperwork to request a speech evaluation.
Z's OT was eliminated as he has caught up to his adjusted age. He will continue with DI once a week, and the DI is doing the paperwork for a speech evaluation for him as well.
I am a little perturbed that its such a hassle to get a speech evaluation. I mean really, my son's are (almost) 13 months adjusted, (almost) 15 months actual and do not say "mama" or "dada" or any other words at all. Obviously with N's CP he is at higher risk for speech issues. Everyone's automatic response is "DI". Well, DI is NOT speech. But because it is cheaper than paying for a speech therapist its their automatic answer until a child is 2 years old. My service coordinator was a little argumentative with me, until ALL of the therapists joined me in saying that both boys need an evaluation. (We really have great therapists).
I just don't get it. Are that many people requesting speech that they have to be so hard assed about having someone do an evaluation? Its not like my boys are 8 months old and not talking. Or a year old and not speaking in full sentences. They aren't even saying "mama" or "dada", and I'm not even looking for them to call me "mama" or my husband "dada" just for them to say the word. And its just an evaluation! We aren't even talking about actual speech therapy yet.
For N, because he was evaluated by an oral motor/speech pathologist in June, we have to wait until September 3rd to submit the paperwork again. The evaluation was for eating issues (although she touched on speech as well) as we were concerned about his sometimes not getting his food in his mouth. We weren't sure if it was due to a weakness in his mouth/tongue or if it was a limitation with his hands/arms. Apparently once a particular discipline has evaluated a child, they cannot do an evaluation of the same discipline for three months. As for Z, we can submit his paperwork anytime. So his DI will be working on the paperwork and hopefully within a month or so an evaluation will be approved and we will have him evaluated.
Sometimes though, I just want to scream. I do everything I can for my boys, we schedule every therapy that's recommended and work hard at the homework we are given. Why exactly is it so difficult to get them the things that they need?
N was increased to OT 6 times per month (he was at once a week), his PT remained the same (twice a week), DI remained the same (once a week) and his DI is doing the paperwork to request a speech evaluation.
Z's OT was eliminated as he has caught up to his adjusted age. He will continue with DI once a week, and the DI is doing the paperwork for a speech evaluation for him as well.
I am a little perturbed that its such a hassle to get a speech evaluation. I mean really, my son's are (almost) 13 months adjusted, (almost) 15 months actual and do not say "mama" or "dada" or any other words at all. Obviously with N's CP he is at higher risk for speech issues. Everyone's automatic response is "DI". Well, DI is NOT speech. But because it is cheaper than paying for a speech therapist its their automatic answer until a child is 2 years old. My service coordinator was a little argumentative with me, until ALL of the therapists joined me in saying that both boys need an evaluation. (We really have great therapists).
I just don't get it. Are that many people requesting speech that they have to be so hard assed about having someone do an evaluation? Its not like my boys are 8 months old and not talking. Or a year old and not speaking in full sentences. They aren't even saying "mama" or "dada", and I'm not even looking for them to call me "mama" or my husband "dada" just for them to say the word. And its just an evaluation! We aren't even talking about actual speech therapy yet.
For N, because he was evaluated by an oral motor/speech pathologist in June, we have to wait until September 3rd to submit the paperwork again. The evaluation was for eating issues (although she touched on speech as well) as we were concerned about his sometimes not getting his food in his mouth. We weren't sure if it was due to a weakness in his mouth/tongue or if it was a limitation with his hands/arms. Apparently once a particular discipline has evaluated a child, they cannot do an evaluation of the same discipline for three months. As for Z, we can submit his paperwork anytime. So his DI will be working on the paperwork and hopefully within a month or so an evaluation will be approved and we will have him evaluated.
Sometimes though, I just want to scream. I do everything I can for my boys, we schedule every therapy that's recommended and work hard at the homework we are given. Why exactly is it so difficult to get them the things that they need?
Tuesday, July 26, 2011
Call me crazy.......
And believe me you would not be the first, but I feel like my moods are sometimes tied to the good news or bad news that each therapy session brings. Today was a good day. Sort of.
We had PT this morning at the hospital where N and Z were born, and we were talking about the various equipment that N might need. I had started asking about this because while we don't need anything right now, the process of getting the equipment can take months (in some cases over a year) depending on whether the equipment is approved or denied and what the appeal process is. The other problem is that insurance companies will only pay for certain types of equipment at certain times. For example, if we chose to get N a wheelchair this year we had better make sure it fits him until he is 6 because insurance will only pay for ONE every FIVE years! Because you know, kids don't grow that much in a five year span..........
Anyway, I had asked about what equipment they thought N might need in the next 6 months to a year so that I could begin the process of figuring out what our insurance company will pay for, what we are going to have to fight for, and what DH (who needs a nickname, I'm thinking Excel due to his fondness for spreadsheets, lol) and I will have to pay for ourselves. In our discussions today, and after N was doing some really nice "walking" with his AFO's and assistance shifting his weight, his PT said that if he continues to improve with his walking and ability to hold himself up we may not even need a gait trainer but could skip right to a walker. Obviously its still really early to know anything for sure. But I couldn't help but feel so very happy when I heard this.
Some days it's the little (ok really big!) things that just make my day!
We had PT this morning at the hospital where N and Z were born, and we were talking about the various equipment that N might need. I had started asking about this because while we don't need anything right now, the process of getting the equipment can take months (in some cases over a year) depending on whether the equipment is approved or denied and what the appeal process is. The other problem is that insurance companies will only pay for certain types of equipment at certain times. For example, if we chose to get N a wheelchair this year we had better make sure it fits him until he is 6 because insurance will only pay for ONE every FIVE years! Because you know, kids don't grow that much in a five year span..........
Anyway, I had asked about what equipment they thought N might need in the next 6 months to a year so that I could begin the process of figuring out what our insurance company will pay for, what we are going to have to fight for, and what DH (who needs a nickname, I'm thinking Excel due to his fondness for spreadsheets, lol) and I will have to pay for ourselves. In our discussions today, and after N was doing some really nice "walking" with his AFO's and assistance shifting his weight, his PT said that if he continues to improve with his walking and ability to hold himself up we may not even need a gait trainer but could skip right to a walker. Obviously its still really early to know anything for sure. But I couldn't help but feel so very happy when I heard this.
Some days it's the little (ok really big!) things that just make my day!
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