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.
Saturday, October 22, 2011
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!
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