So in the past few weeks I realized that I have been telling Nathan to slow down. It is not exactly a run, sort of somewhere in the middle of walking and running. But the point is I have to tell him to slow down so that I can catch up with him which is really great!
Bennett is still not doing much of anything. His crib is still on the highest setting because there is no risk of him pulling up or anything. It is frustrating to see his peers in the baby room at school who went from being babies five months ago to now being toddlers walking around the room. I wish Bennett were walking. I much prefer that age than the baby age which has taken forever with Nathan and Bennett. He still doesn't have any teeth either so bottles and baby food are his only options for a while. It would be easier if he could eat regular food and he wants to, but he just can't handle it.
1.30.2010
1.28.2010
medicines
The medications are going well. The biggest problem we have is that it is making us late in the mornings. It takes a lot of time to prepare and administer. It cannot sit for more than ten minutes so we can't even make it ahead of time. The boys seem to be tolerating it well. Bennett has a cold right now and I am trying to decide if I should take him to the pediatrician. It is just a cough with no fever. I hate taking them to the pediatrician for everything bc I worry about them catching something else while we are there.
I've been doing fairly well lately. When I live in the moment, not worrying about the future and not comparing ourselves to other families/kids, I do alright but that is difficult for me to do all the time.
It amazes me that Nathan is going to be five this summer and is eligible for kindergarten in the fall. We are not sending him with hopes that an extra year might give him a little bit more time to get bigger and manuever through the school. So one more year of paying for childcare for two kids!
I've been doing fairly well lately. When I live in the moment, not worrying about the future and not comparing ourselves to other families/kids, I do alright but that is difficult for me to do all the time.
It amazes me that Nathan is going to be five this summer and is eligible for kindergarten in the fall. We are not sending him with hopes that an extra year might give him a little bit more time to get bigger and manuever through the school. So one more year of paying for childcare for two kids!
1.24.2010
Been awhile...
Its been awhile since I posted which means there is not much going on which is a good thing. Here are pictures of Nathan and the Mickey Mouse that was in the therapy room at Children's Hospital Boston. The ribbon he has on in the first picture was given to him by Dr. Gordon for completing his first round of testing and treatment. The ribbon has since been scrubbed with hot soapy water as soon after this picture he accidentally peed on it. In the last week I have looked back on the week in Boston with some nostalgia. It was great to feel like we were doing something to benefit the boys. We were so focused on the tasks at hand, my mind had little time to wander. Seeing other kids in the hospital who are unable to walk or who are cognitively impaired also makes me grateful for our boys. Then when you come home, you see that everyone around you has healthy "typical" kids the grief starts creeping back. I also started thinking about the summer and how difficult it is being at the pool with my two kids being the only visible special needs kids.
I really hope this treatment works. The doubts creep in when I hear Dr. Kieran in the back of my mind telling us that mouse studies do not always predict success in humans. In his words "we have cured cancer in mice a thousand times over." One of the things that keeps me hoping is the fact that two of my kids have the disorder. I can't help thinking that the reason Bennett has this disorder is so that we would pursue treatment. I wonder what would have happened if he had not had the disorder. When would we have gotten an accurate diagnosis for Nathan? I wonder if I would have been so adamant in pursuing treatment or if I would have been content to accept his special needs knowing that we had two healthy children. I don't think I would have sat back but sometimes I just wonder.
1.17.2010
things I learned
What I learned about our family during our trip.
About Mark, I learned that he will do just about anything to make things easier for me, especially with the medical stuff. If we had to separate and each take a kid, I usually got the better deal. Also, I learned that his face is too pretty for facial hair (5 days of no shaving).
Me. I don't know really what I learned about myself. I guess I realized I am pretty strong when necessary. I was also reminded that in normal circumstances, I am a very social person. I always tell Mark I am anti-social to which he always laughs and rolls his eyes. I guess he is right because I actually enjoyed that part of being in a house. A couple of the evenings I spent a little bit of time talking to other parents in the kitchen and sharing stories. I truly enjoy learning about other people and their experiences. I also learned that prayer can really make a difference. I prayed alot about this week and I know others prayed too. It wasn't easy, but some of the things that would normally bother me did not and everything worked out. The only times I got down were when tests revealed that Bennett and Nathan have alot of the symptoms as children with classic progeria.
Nathan, We learned that he really likes blonde attractive women. When they come in a room, his whole face lights up. Other people noticed it too. Notice I have short brown hair. I also realize that Nathan is an unusually good four year old. I cannot believe how long he can sit still, not only for the MRI but even just sitting for over an hour while Mark and I talked to doctors.
Bennett we learned has a bad temper. When he doesn't want to do something, he launches things. He didn't want to do occupational therapy so he just started throwing blocks, far too! He is now done with baby food. He wants table food and is very frustrated with anything else. If he had any teeth, this would not be a problem. Today he even started launching baby snacks so I'm not sure what we are going to do now!
With Libby, I just gained an appreciation for her. She is such a beautiful little girl. She requires alot more attention than most kids her age but I am beginning to recognize that if that is what she needs, that is what we should give her. It must be really difficult for her with two brothers who have so many special needs and require so much time and energy. I think she matured a little bit over the week and understands more what her brothers are going through.
I think we did well as a family and grew as a family even though we were apart.
About Mark, I learned that he will do just about anything to make things easier for me, especially with the medical stuff. If we had to separate and each take a kid, I usually got the better deal. Also, I learned that his face is too pretty for facial hair (5 days of no shaving).
Me. I don't know really what I learned about myself. I guess I realized I am pretty strong when necessary. I was also reminded that in normal circumstances, I am a very social person. I always tell Mark I am anti-social to which he always laughs and rolls his eyes. I guess he is right because I actually enjoyed that part of being in a house. A couple of the evenings I spent a little bit of time talking to other parents in the kitchen and sharing stories. I truly enjoy learning about other people and their experiences. I also learned that prayer can really make a difference. I prayed alot about this week and I know others prayed too. It wasn't easy, but some of the things that would normally bother me did not and everything worked out. The only times I got down were when tests revealed that Bennett and Nathan have alot of the symptoms as children with classic progeria.
Nathan, We learned that he really likes blonde attractive women. When they come in a room, his whole face lights up. Other people noticed it too. Notice I have short brown hair. I also realize that Nathan is an unusually good four year old. I cannot believe how long he can sit still, not only for the MRI but even just sitting for over an hour while Mark and I talked to doctors.
Bennett we learned has a bad temper. When he doesn't want to do something, he launches things. He didn't want to do occupational therapy so he just started throwing blocks, far too! He is now done with baby food. He wants table food and is very frustrated with anything else. If he had any teeth, this would not be a problem. Today he even started launching baby snacks so I'm not sure what we are going to do now!
With Libby, I just gained an appreciation for her. She is such a beautiful little girl. She requires alot more attention than most kids her age but I am beginning to recognize that if that is what she needs, that is what we should give her. It must be really difficult for her with two brothers who have so many special needs and require so much time and energy. I think she matured a little bit over the week and understands more what her brothers are going through.
I think we did well as a family and grew as a family even though we were apart.
home again
We are so glad to be home again, but overwhelmed with getting things back in order. What is making it more difficult is that things never were in order in the first place. Plus we have tons of new medications and supplies that I have to fit in our kitchen that is already bursting at the seams because it lacks cupboard space. I am not sure how I am going to get it all organized.
In true Phyllis fashion, I spent way too much time making up a log for all of the boys medications so that we can check of when we give the medications. The house is a disaster but I am working on perfecting a spreadsheet! We have to keep a log of the times we give the medications and take the log and empty bottles back with us in six months. We have a six month supply with gloves, masks, oral syringes, cups for mixing and the actual medications. It is about three shopping bags full of stuff. Giving the boys the medication is difficult too because they don't like them. Nathan takes eight medications in the morning and Bennett takes 5 medications. At dinner they both take one medication and at night Nathan takes 6 doses of medications and Bennett takes 4 doses of medications. If you can imagine giving a four year old 8 doses of medications, it is a lot. Only two of the drugs are study medications and two are supplements due to the trial medications. The rest are medications they were previously taking and will continue to take.
Thank goodness my mom is coming this week to provide some much needed assistance.
I was so happy to see Libby. I didn't realize how much I missed her until I saw her pretty little face. She told Mee Ma Falcone that she was going to be nice to Nathan since he had been through so much but they are already fighting today. She does not seem jealous though of the time he spent with us, only jealous that he got to ride on a plane again. She was very good for the babysitter and Nathan had no potty accidents all week so we will most likely take them to Dave and Busters as a reward for such great behavior. I forgot what a big girl Libby is after being with Nathan and Bennett all week. Its amazing what 2 1/2 years does for a child.
We met with Dr. Gordon on Thursday. She is wonderful! She is so sweet and down to earth. She brought gifts for the kids including stuffed animals, a marble heart, a ribbon for completing the first treatment and a car that changes color in cold/hot water. I have pictures of Nathan to post later.
In true Phyllis fashion, I spent way too much time making up a log for all of the boys medications so that we can check of when we give the medications. The house is a disaster but I am working on perfecting a spreadsheet! We have to keep a log of the times we give the medications and take the log and empty bottles back with us in six months. We have a six month supply with gloves, masks, oral syringes, cups for mixing and the actual medications. It is about three shopping bags full of stuff. Giving the boys the medication is difficult too because they don't like them. Nathan takes eight medications in the morning and Bennett takes 5 medications. At dinner they both take one medication and at night Nathan takes 6 doses of medications and Bennett takes 4 doses of medications. If you can imagine giving a four year old 8 doses of medications, it is a lot. Only two of the drugs are study medications and two are supplements due to the trial medications. The rest are medications they were previously taking and will continue to take.
Thank goodness my mom is coming this week to provide some much needed assistance.
I was so happy to see Libby. I didn't realize how much I missed her until I saw her pretty little face. She told Mee Ma Falcone that she was going to be nice to Nathan since he had been through so much but they are already fighting today. She does not seem jealous though of the time he spent with us, only jealous that he got to ride on a plane again. She was very good for the babysitter and Nathan had no potty accidents all week so we will most likely take them to Dave and Busters as a reward for such great behavior. I forgot what a big girl Libby is after being with Nathan and Bennett all week. Its amazing what 2 1/2 years does for a child.
We met with Dr. Gordon on Thursday. She is wonderful! She is so sweet and down to earth. She brought gifts for the kids including stuffed animals, a marble heart, a ribbon for completing the first treatment and a car that changes color in cold/hot water. I have pictures of Nathan to post later.
1.15.2010
We are all done.
We are all done with everything. After an appointment with the vascular clinic today, we waited around for two hours and then got our final medication. So they got the first medication, the Pravastatin on Wednesday. That is the medication that is usually used for lowering cholesterol and the boys get it once daily. It is a pill that Nathan is able to swallow. For Bennett, it has to be cut in half and then it can be crushed up in food. On Thursday they got the Zolondranate through infusion. This is the drug that is given every six months when we visit. It is typically given to older women for osteoporosis. The third and final drug was given today at 2:00. It is Lonafarnib, the drug that was originally intended for treating cancer in children. It requires that we wear gloves and a mask as it is a radiation/chemo drug. It also requires some very delicate mixing, emptying a pill into a solution, mixing the solution until it is smooth and then drawing it up again in a syringe to get the right amount. It doesn't seem right that we have to protect ourselves from a medication we are giving our kids. In fact the whole medication thing is a bit scary, putting all this into them. And if it works, then what? We give it to them for the rest of their lives? I guess I don't need to worry about that yet.
Well I have lots of other stories, things I learned about us and thoughts I have about our situation. I will bore you with all that later and post a couple of pictures of Nathan with a large Mickey Mouse they had in the PT room.
So I can't believe the kids had all three medications! Let them grow and gain weight and get stronger!
Well I have lots of other stories, things I learned about us and thoughts I have about our situation. I will bore you with all that later and post a couple of pictures of Nathan with a large Mickey Mouse they had in the PT room.
So I can't believe the kids had all three medications! Let them grow and gain weight and get stronger!
1.14.2010
bummed..
Well the good news is we will be done tomorrow at around 2pm. The bad news is our flight is not until Saturday at noon, getting us home at 2:30pm. They scheduled our flight for Saturday in case we didn't get finished on friday. I thought we could switch flights with a minimal penalty but they charge $150 per passenger. I'm bummed we have to stick around when we could be home with Libby. I had my heart set on leaving tomorrow. I hear Libby has been having meltdowns regarding missing us and didn't want to go to school today. Poor Libby. It has gone quickly for us but probably slow for her.
Done
We are so done with all this. This morning was very rough. Bennett has been a mess since the sedation yesterday but seems to be in better spirits now. Just in time for the infusion of Lonafarb in one hour. Nathan is not himself today. This morning for the iv for bloodwork/infusion, he screamed and screamed and screamed some more. He was even a little fussy for the hearing test. The boys have had to fast for two nights now so that has added to the miserableness. Tonight they have to fast again. Mark is done, I am done and the boys are done. I am tired of watching the boys get stuck with needles, have to hold still and not allowed to eat. Mark is tired of running around. I am also tired of hearing of all the things that are not 'normal' on the boys. Yesterday the OT's talked about several limitations, delays in Nathan's fine motor skills etc. Bennett has no teeth and Nathan has 12 when he is supposed to have 20 at his age. Today the audiology tests revealed a slight to mild hearing loss for both boys, low tones. Mark does not believe any the hearing test was accurate. Each of the different specialists have some suggestion of what she should do in that area to improve the condition or modify the boys environments. No offense but cavaties are the least of our worries right now.
Around the time of the infusion, we should see Dr. Leslie Gordon. She has been away at a conference so we haven't seen her yet this week.
Around the time of the infusion, we should see Dr. Leslie Gordon. She has been away at a conference so we haven't seen her yet this week.
CHB and Devon Nicole House
I wanted to share our experiences with CHB and DNH. I was very nervous about staying in a house with a shared bathroom and kitchen but I have to say I have been pleasantly surprised. It is really nice and we would definitely stay here again. Our room is small so with the air mattress and pack n play, we have no room to move around. We are tripping and running into things. The common areas are small so there is really not enough room to hang out in them. That being said, it is great. The kitchen allows us to eat here and eat cheaply. The shared bathroom is not a big deal. They have a washer and dryer and we did a load last night. And the best part is it is within walking distance to the hospital. We don't have to deal with a car and parking which is wonderful.
The staff at CHB is so great. Almost all of them are very child friendly. I will get into the unfriendly ones later. They all remember which one of our boys is Bennett and which is Nathan and they do not get them confused. They all appear to be trained to show Nathan their instruments before they use them and when they can they even do things to themselves before doing them on him. For example the physical therapist was taking Nathan's pulsox with that finger thing. She first put it on her finger and waited for it to beep. It is really nice to be greeted with such enthusiasm by each and every person here.
The exception was the dermatologist on Tuesday. It was probably also due to our experiences throughout the day. We were exhausted and the boys were done. The dermatologist was not the most sensitive and didn't really talk to the boys. She was trying to take pictures of Bennett's hair. She decided to draw a square on his head, zoom in later and count the hairs. She commented that Bennett wasn't too happy. Mark was understandably horrified by her lack of bedside manner and responded that he wouldn't be happy if someone were drawing on his head either. I was very proud of Mark because he is normally so well-behaved!
The staff at CHB is so great. Almost all of them are very child friendly. I will get into the unfriendly ones later. They all remember which one of our boys is Bennett and which is Nathan and they do not get them confused. They all appear to be trained to show Nathan their instruments before they use them and when they can they even do things to themselves before doing them on him. For example the physical therapist was taking Nathan's pulsox with that finger thing. She first put it on her finger and waited for it to beep. It is really nice to be greeted with such enthusiasm by each and every person here.
The exception was the dermatologist on Tuesday. It was probably also due to our experiences throughout the day. We were exhausted and the boys were done. The dermatologist was not the most sensitive and didn't really talk to the boys. She was trying to take pictures of Bennett's hair. She decided to draw a square on his head, zoom in later and count the hairs. She commented that Bennett wasn't too happy. Mark was understandably horrified by her lack of bedside manner and responded that he wouldn't be happy if someone were drawing on his head either. I was very proud of Mark because he is normally so well-behaved!
middle of the night
Yes it is the middle of the night. I cannot sleep which is a slightly embarrassing story. Last night on the way home from the hospital I was pushing the boys in the stroller. Apparently we had hung too much stuff on the plastic stroller hook. (We are at the hospital all day so we have a lot to pack). As I was starting to cross the street, the hook broke, the bags fell and I had nowhere to go and tripped and fell. It happened so fast. My back hurts really bad because I was trying to hold on to the stroller but get out of the way of the bags. I landed on my knee so it hurts pretty bad too. So that is why I am awake, that and going to bed at 8:30 because I was exhausted. I can't believe we are at Day 4! It really has gone quickly thanks to being so busy. I am looking forward to finishing up tomorrow and Friday. We are scheduled to fly out on Saturday. I wish we could fly out tomorrow but I don't see that happening. I'm not sure what time we will finish and I don't know how expensive it is to rearrange flights. We may just stick around.
1.13.2010
Day 3
I am so sorry it has taken me so long to update the blog. I updated it yesterday but for some reason it didn't post. Where to begin
I can't recall where I left off yesterday but has been a busy three days thus far. We have not had time for lunch most days, sometimes not eating until 3:30pm. The boys have had one night of fasting and then all day today they fasted prior to sedation for MRI's. Tonight they have to fast again for bloodwork in the morning. Nathan has been outstanding as usual. They didn't seem to believe me that he would lay still for an MRI so they had him fast in case he needed sedation. He didn't. He layed still for 35 minutes! Bennett was sedated which was a whole ordeal. He slept in the recovery room for over an hour and is still miserable and tired now that we are back at the house.
Like I said, it has been crazy. Some of the appointments are scheduled half hour apart so it is easy to get behind schedule. Mark and I have been separated alot because of having two children and appointments in two different areas of the hospital. The good part is we don't typically have to wait for appointments because we are part of the clinical trial. Yesterday we waited half hour for the MRI assessments most of our other appointments seem to be on time.
Today was really the first day I have about had enough. It is just one thing after another for the boys. I wish I had brought my camera to the hospital and would have taken a picture of them undergoing each test or exam. I think it would give everyone a better understanding of how much it really is for them. I feel worse for Nathan because he knows what is going on. The dermatologist took pictures, the dentist took pictures, hold still for the MRI, do this, do that......I just hate it but I know it is what we have to do for them.
More later, but we are tired and miserable. The boys got their first medicine yesterday. It is not the one with the two days of symptoms. That one is tomorrow by transfusion. The last medication will be given for the first time on Friday.
I can't recall where I left off yesterday but has been a busy three days thus far. We have not had time for lunch most days, sometimes not eating until 3:30pm. The boys have had one night of fasting and then all day today they fasted prior to sedation for MRI's. Tonight they have to fast again for bloodwork in the morning. Nathan has been outstanding as usual. They didn't seem to believe me that he would lay still for an MRI so they had him fast in case he needed sedation. He didn't. He layed still for 35 minutes! Bennett was sedated which was a whole ordeal. He slept in the recovery room for over an hour and is still miserable and tired now that we are back at the house.
Like I said, it has been crazy. Some of the appointments are scheduled half hour apart so it is easy to get behind schedule. Mark and I have been separated alot because of having two children and appointments in two different areas of the hospital. The good part is we don't typically have to wait for appointments because we are part of the clinical trial. Yesterday we waited half hour for the MRI assessments most of our other appointments seem to be on time.
Today was really the first day I have about had enough. It is just one thing after another for the boys. I wish I had brought my camera to the hospital and would have taken a picture of them undergoing each test or exam. I think it would give everyone a better understanding of how much it really is for them. I feel worse for Nathan because he knows what is going on. The dermatologist took pictures, the dentist took pictures, hold still for the MRI, do this, do that......I just hate it but I know it is what we have to do for them.
More later, but we are tired and miserable. The boys got their first medicine yesterday. It is not the one with the two days of symptoms. That one is tomorrow by transfusion. The last medication will be given for the first time on Friday.
1.12.2010
Libby
We are busy as usual here at CHB. I spoke to Libby via skype last night which was good and bad. I feel so awful because she is so so sad. She was crying and saying that it is too long and I totally agree with her. She asked if we could please come home. Oh my gosh, my heart was breaking. I wish she could understand. If you are praying, if you could please pray for Libby. Pray that the rest of the week goes quickly for her and she has alot of fun despite us not being there. Actually that is probably a selfish request because it is more about me not feeling guilty. I know we have no choice and have to be here, but I feel like such an awful mom.
So far this morning we have had a dexa and some other kind of scan for Nathan and Bennett in which they had to hold still. After fasting last night both boys had to do a resting energy expenditure test in which they had to lay still for 30 minutes with a bubble like thing over their heads. Nathan completed it but they were happy with Bennett's 20 minutes. Nathan just had an EKG and Bennett is in physical therapy with Mark. Next we have neurology, MRI, nutritionist, dermatology and medication. We should be done early today, around 3:30 or 4pm.
Last night Nathan and I got home at 5:30. The hospital is only about 2.5 blocks from the Devon Nicole House (DNH) so it is a pretty easy walk. Walking home in the dark with Nathan in an unknown city was actually one of the bright spots of my day. He walked all by himself. We stopped and got him McDonalds and then we walkd while he asked questions about the traffic lights and told me about the two "monies" in his pocket. He thinks maybe Santa gave them to him for being such a good boy. It was one of those really nice moments when you're not in a hurry and can enjoy your being with your kids.
So far this morning we have had a dexa and some other kind of scan for Nathan and Bennett in which they had to hold still. After fasting last night both boys had to do a resting energy expenditure test in which they had to lay still for 30 minutes with a bubble like thing over their heads. Nathan completed it but they were happy with Bennett's 20 minutes. Nathan just had an EKG and Bennett is in physical therapy with Mark. Next we have neurology, MRI, nutritionist, dermatology and medication. We should be done early today, around 3:30 or 4pm.
Last night Nathan and I got home at 5:30. The hospital is only about 2.5 blocks from the Devon Nicole House (DNH) so it is a pretty easy walk. Walking home in the dark with Nathan in an unknown city was actually one of the bright spots of my day. He walked all by himself. We stopped and got him McDonalds and then we walkd while he asked questions about the traffic lights and told me about the two "monies" in his pocket. He thinks maybe Santa gave them to him for being such a good boy. It was one of those really nice moments when you're not in a hurry and can enjoy your being with your kids.
1.11.2010
Day 1
Well Day 1 of our big adventure is almost over and we have su rvived. Bennett has been awake since 3:30am so with our jam pack day, we are all pretty exhausted. I am so proud of Nathan. He was such a trooper today. We talked to the doctors for about two hours in a patient room and he was so well behaved. We met first with Dr. Keirnan who went through all the consents with us. The possible but unlikely side effects are a little frightening but of course we want to proceed. He was one of the best doctors at explaining things to us. He took his time, explained why they allowed B and N in the clinical trial, gave us lots of different scenarios and was so patient in answering our questions. He didn't pay much attention to the kids, but he was wonderful with us. Nathan and Bennett received brief physical exams, bloodwork and extensive x-rays. Nathan also had an evaluation with a physical therapist which took about 1 and a half hours. It was very hectic today with no downtime.
Tomorrow morning we are to be at the hospital at 7:30 am which should be interesting. My New Years resolution is to be five minutes early for everything and so far we have been good. We were at the airport one hour early and this morning we were at the hospital 15 minutes early. Of course this morning we only had to be there at 9:45am. Tomorrow looks as busy as today with an MRI for each child, collecting 24 hours of urine, dexa scans etc.
Mark talked to Libby today via Skype. I was still at the hospital with Nathan doing the PT evaluation. I miss Libby so much and feel so guilty that we are not together. I can't quite imagine that today is only day 1 and it will be Saturday until we see her again. I appreciate all the people at home that are taking good care of her so that we are free to deal with the boys needs. I hope she is not mad at us forever and I hope the behavioral repercussions are minimal when we return. I don't quite know what to say when we are on the phone and she is sad. 'We'll be home in five days' is not real comfortable.
Overall it is going well. We really appreciate your thoughts and prayers. The boys will be getting the one medication tomorrow. It is given via injection every six months and is typically followed by flu-like symptoms for two days. Dr. K said this will be a difficult three days with possible stomach pains, vomiting, fever and/or diarrhea. Should be good times stuck in a 12 x 15 room with them! We are really excited to be starting treatment and the possibility of slowing down this disease.
Tomorrow morning we are to be at the hospital at 7:30 am which should be interesting. My New Years resolution is to be five minutes early for everything and so far we have been good. We were at the airport one hour early and this morning we were at the hospital 15 minutes early. Of course this morning we only had to be there at 9:45am. Tomorrow looks as busy as today with an MRI for each child, collecting 24 hours of urine, dexa scans etc.
Mark talked to Libby today via Skype. I was still at the hospital with Nathan doing the PT evaluation. I miss Libby so much and feel so guilty that we are not together. I can't quite imagine that today is only day 1 and it will be Saturday until we see her again. I appreciate all the people at home that are taking good care of her so that we are free to deal with the boys needs. I hope she is not mad at us forever and I hope the behavioral repercussions are minimal when we return. I don't quite know what to say when we are on the phone and she is sad. 'We'll be home in five days' is not real comfortable.
Overall it is going well. We really appreciate your thoughts and prayers. The boys will be getting the one medication tomorrow. It is given via injection every six months and is typically followed by flu-like symptoms for two days. Dr. K said this will be a difficult three days with possible stomach pains, vomiting, fever and/or diarrhea. Should be good times stuck in a 12 x 15 room with them! We are really excited to be starting treatment and the possibility of slowing down this disease.
1.10.2010
Thank you
Thank you all so much for all of your continued prayers for us during this trip. We are hoping for a good trip. Leaving Libby was very hard but she was excited to stay with whom she is staying so that made it easier. Our flight was good, no problems at all. Bennett is much more difficult now then he was in August when we flew. Actually I think he is frustrated in general with his inability to do things and move around. When he sits on the floor to play he can't get to anything. His brain seems to be ahead of his body. Dr. Gordon's sister Audrey who is also the president of the foundation met us at the airport with her very sweet 9 year old daughter.
The house is really nice. They have some food and a space for each family in the kitchen & fridge to store their food. We are room number 4 (of 13), which we hear is one of the bigger ones. It is still a pretty tight living space for four, smaller than a hotel room with a double bed, air mattress for Nathan and a pack n play for Bennett. We just ordered food and then will probably be having an early night. I am so mad at myself because I forgot my cell phone so if you try to call us, call Mark. I have my charger which Mark reminded me to bring, but forgot the actual phone!!
Tomorrow morning it's off to the hospital at 9:30am.
The house is really nice. They have some food and a space for each family in the kitchen & fridge to store their food. We are room number 4 (of 13), which we hear is one of the bigger ones. It is still a pretty tight living space for four, smaller than a hotel room with a double bed, air mattress for Nathan and a pack n play for Bennett. We just ordered food and then will probably be having an early night. I am so mad at myself because I forgot my cell phone so if you try to call us, call Mark. I have my charger which Mark reminded me to bring, but forgot the actual phone!!
Tomorrow morning it's off to the hospital at 9:30am.
1.09.2010
Good News!!
The good news is I got a new laptop since my other one died. The bad news is I am returning my sewing machine that Santa brought me prior to knowing that my laptop was on it's last leg. The good news is my new laptop has a webcam!! We will be able to talk to Libby via Skype and see her!! I am hoping this helps us both although she doesn't seem like she is going to miss us too much. For some reason the ability to see her when we are talking to her makes me feel really good! I am feeling much better this afternoon, much more positive about our trip. My dream of having matching children is gone but if Nathan and Bennett's health can be improved by this treatment I will be so happy! My cure for my depression today was writing the blog, a nap and Nathan. Nathan always brings me out of my funk because he is so full of personality and normal in so many ways. It just reminds me that my children are much more than this disorder. I also know for sure that Dr. Gordon-the founder of the Progeria Research Foundation and mother of a child with progeria-will not stop until she finds successful treatment/cure for this disorder.
getting ready
We are getting ready for our trip. I have been on the verge of losing it all week, probably due to thinking about it all. Honestly I haven't done much preparing all week except for all the mental notes flying through my head about what I need to do. Unfortunately most things have to be done last minute. I am nervous about missing/leaving Libby, watching the boys go through all the testing, sharing a bathroom, having all four of us in one room for a week, going through airport security and not having a car. Some of these probably sound silly but it is all going on in my head. My laptop died in the middle of work on Tuesday which only contributed to the stress.
Another thing that put me in a little funk this week was a woman at the post office who was complaining to the postal worker. She was lamenting about her youngest child being only five. She has three older children who have all graduated from high school and she is starting all over again. She cannot believe that this Spring she has to go through little league all over again! Oh the horror! I guess it is just difficult knowing that something I dream of for my boys would be such a pain for someone else. I know it is all relative because there are families who would die for the chance to have their child walk, talk or be pursuing a treatment for their kids. I know we all complain, sometimes just to make conversation and most of the time it doesn't bother me. It was just that this is something I would love for my boys because it is a rite of passage for boys.
I was also feeling really guilty this week for the way that I feel about my boys and our family. I get so down and sad about all that is lost and it seems that other parents of special needs kids seem to be so upbeat and positive. Of course I am happy to be Libby, Nathan and Bennett's mom but I am not happy that Nathan and Bennett look different and have different abilities than their peers. I still see this as a loss and not a blessing. Yes, they are a blessing but they are not more or less of a blessing because of thier special needs. Does that make sense?
So I continue to search for answers as to why I feel differently than other parents of special needs kids. What is wrong with me? Why am I the only one who seems to think this sucks? I still cannot find the answers to that question but I think it has to do with who I was before this all happened. I had very little self-esteem as a child and young adult. Then after college and Mark and I got married. I was happy and confident but I guess it was fragile because when infertility struck, I was right back there again. Then Nathan was born two months premature. I felt that not being able to finish the pregnancy and having to leave the hospital without him was just one more normalcy of life that was taken from me. So I have been thinking about what life would have been like had I felt normal growing up. What if I had not entered kindergarten with a hole in my neck (trach)? What if I had a bike and could have ridden on bicycle safety day rather than sitting inside with the teacher every year? What if we had a television while I was growing up so I didn't feel like an outsider when my peers discussed the A-team and Knight Rider? What if I had not been slower than the slowest kid in gym class and always picked last? Maybe I would have been able to build up some kind of a reserve of positive, normal experiences. I know these things seem minor but when you are a kid, they are everything!! Maybe I could stand to take a hit like this. I think I often see of this as a reflection of me. Subconsciously I feel like I was not good enough to have three healthy children. I have to remind myself that is not the case. My sister Donna pointed that out a couple of years ago, that no one thinks less of me because Libby is adopted or Nathan (and now Bennett) have this disorder. Then there are people that say that we are more special because God has chosen us to be their parents. But you don't understand....I don't want to be more special. I just want to be normal!
ahhhh I feel much better now! We have gotten a tentative schedule for the week. It loooks like we are going to be busy! Hopefully it will make it go quickly. They will begin the medication this week too which is exciting! I will keep you posted from Boston!
Another thing that put me in a little funk this week was a woman at the post office who was complaining to the postal worker. She was lamenting about her youngest child being only five. She has three older children who have all graduated from high school and she is starting all over again. She cannot believe that this Spring she has to go through little league all over again! Oh the horror! I guess it is just difficult knowing that something I dream of for my boys would be such a pain for someone else. I know it is all relative because there are families who would die for the chance to have their child walk, talk or be pursuing a treatment for their kids. I know we all complain, sometimes just to make conversation and most of the time it doesn't bother me. It was just that this is something I would love for my boys because it is a rite of passage for boys.
I was also feeling really guilty this week for the way that I feel about my boys and our family. I get so down and sad about all that is lost and it seems that other parents of special needs kids seem to be so upbeat and positive. Of course I am happy to be Libby, Nathan and Bennett's mom but I am not happy that Nathan and Bennett look different and have different abilities than their peers. I still see this as a loss and not a blessing. Yes, they are a blessing but they are not more or less of a blessing because of thier special needs. Does that make sense?
So I continue to search for answers as to why I feel differently than other parents of special needs kids. What is wrong with me? Why am I the only one who seems to think this sucks? I still cannot find the answers to that question but I think it has to do with who I was before this all happened. I had very little self-esteem as a child and young adult. Then after college and Mark and I got married. I was happy and confident but I guess it was fragile because when infertility struck, I was right back there again. Then Nathan was born two months premature. I felt that not being able to finish the pregnancy and having to leave the hospital without him was just one more normalcy of life that was taken from me. So I have been thinking about what life would have been like had I felt normal growing up. What if I had not entered kindergarten with a hole in my neck (trach)? What if I had a bike and could have ridden on bicycle safety day rather than sitting inside with the teacher every year? What if we had a television while I was growing up so I didn't feel like an outsider when my peers discussed the A-team and Knight Rider? What if I had not been slower than the slowest kid in gym class and always picked last? Maybe I would have been able to build up some kind of a reserve of positive, normal experiences. I know these things seem minor but when you are a kid, they are everything!! Maybe I could stand to take a hit like this. I think I often see of this as a reflection of me. Subconsciously I feel like I was not good enough to have three healthy children. I have to remind myself that is not the case. My sister Donna pointed that out a couple of years ago, that no one thinks less of me because Libby is adopted or Nathan (and now Bennett) have this disorder. Then there are people that say that we are more special because God has chosen us to be their parents. But you don't understand....I don't want to be more special. I just want to be normal!
ahhhh I feel much better now! We have gotten a tentative schedule for the week. It loooks like we are going to be busy! Hopefully it will make it go quickly. They will begin the medication this week too which is exciting! I will keep you posted from Boston!
1.03.2010
more Boston talk
I was sitting in church this morning thinking about the fact that we are going to Boston in a week for clinical trials for our boys. I cannot believe that this all happened so quickly! How fortunate we are to have learned of Bennett and Nathan's diagnosis at the beginning of this clinical trial! We are so lucky to have been accepted for the trial when other non-classic progeria patients have not been able to participate.
There are lots of unknowns and I am trying really hard not to worry about them. We have our flight information but do not know where we are staying or if we have to make the arrangements. I emailed another parent of a child with Progeria and she said that the first time they stayed at the Devon Nicole House, (a Ronald McDonald type house). Ms. P said that now when they go they rent a hotel room just to get away from the hospital in the evenings. I looked up the Devon Nicole house and it houses 35 families with communal living room, kitchen etc. I don't know if we have to reserve that or not. Hopefully this week we will know more. Ms. P also said that at the beginning of each day there is a schedule of appts; however, it often changes. There is some down time and a playroom/television for the kids. Nathan got his bloodwork that was requested from Boston prior to our trip. The phlebotomist could not get Bennett's blood drawn so Mark is going to try again one more time this week.
Last night Mark and I had a babysitter and went out to dinner. It was so nice. We rarely do dates and really enjoyed being able to talk. He took a couple days off around the holidays which was great too. I know that this week in Boston will be stressful for both of us so it was nice to have some time to ourselves.
There are lots of unknowns and I am trying really hard not to worry about them. We have our flight information but do not know where we are staying or if we have to make the arrangements. I emailed another parent of a child with Progeria and she said that the first time they stayed at the Devon Nicole House, (a Ronald McDonald type house). Ms. P said that now when they go they rent a hotel room just to get away from the hospital in the evenings. I looked up the Devon Nicole house and it houses 35 families with communal living room, kitchen etc. I don't know if we have to reserve that or not. Hopefully this week we will know more. Ms. P also said that at the beginning of each day there is a schedule of appts; however, it often changes. There is some down time and a playroom/television for the kids. Nathan got his bloodwork that was requested from Boston prior to our trip. The phlebotomist could not get Bennett's blood drawn so Mark is going to try again one more time this week.
Last night Mark and I had a babysitter and went out to dinner. It was so nice. We rarely do dates and really enjoyed being able to talk. He took a couple days off around the holidays which was great too. I know that this week in Boston will be stressful for both of us so it was nice to have some time to ourselves.
1.01.2010
Wow! 2009
I started this blog entry on January 1st but have had writers blog so I am just getting back to it now.
Wow, so much has happened in 2009! Last year at this time we had a brand new baby and 3 year old with an inaccurate diagnosis. This year we have gotten some devastating news about our youngest two and some hope for treatment. We have also learned more about Libby and her problems with inattention and how it is affecting her school work. Nathan turned four and got rid of those diapers. Bennett learned to roll, sit, clap, say a momma/dadda and wave. He also has two new skills which are peek-a-boo (my sisters are taking credit for that one) and shaking his head no which of course is adorable. I think the shaking his head is my favorite. Sometimes he gets them all confused and waves when we ask him to do peek a bo0, does peek a boo when we ask him to clap etc. It is pretty cute.
So I am getting anxious about our trip. I am starting to freak about leaving Libby for so long and worried about Nathan and Bennett going through all the testing and appointments with physicians. I wish there was some way that Mark and I could do half and half so that we wouldn't have to leave Libby but I know it is important that we both be there. I certainly don't think I could handle the boys myself. I have been wracking my brain trying to figure out a way for her to come up halfway through the week but how would she get there by herself and can she really afford to miss two days of school? Mark and I talked tonight about taking her out the Friday or Saturday night before our trip and having some special time just with her before we go. Or maybe we should do that after the trip so she can look forward to something fun. I also considered getting web cams so we can see her and she can see us when we talk to her. Anyway, I am just thinking out loud. I know we don't need a web cam. We will all survive. I just want it to be over, partially because I don't know what to expect. Of course I am also hopeful that all this is worth the effort and improves the lives of our boys and our family.
Wow, so much has happened in 2009! Last year at this time we had a brand new baby and 3 year old with an inaccurate diagnosis. This year we have gotten some devastating news about our youngest two and some hope for treatment. We have also learned more about Libby and her problems with inattention and how it is affecting her school work. Nathan turned four and got rid of those diapers. Bennett learned to roll, sit, clap, say a momma/dadda and wave. He also has two new skills which are peek-a-boo (my sisters are taking credit for that one) and shaking his head no which of course is adorable. I think the shaking his head is my favorite. Sometimes he gets them all confused and waves when we ask him to do peek a bo0, does peek a boo when we ask him to clap etc. It is pretty cute.
So I am getting anxious about our trip. I am starting to freak about leaving Libby for so long and worried about Nathan and Bennett going through all the testing and appointments with physicians. I wish there was some way that Mark and I could do half and half so that we wouldn't have to leave Libby but I know it is important that we both be there. I certainly don't think I could handle the boys myself. I have been wracking my brain trying to figure out a way for her to come up halfway through the week but how would she get there by herself and can she really afford to miss two days of school? Mark and I talked tonight about taking her out the Friday or Saturday night before our trip and having some special time just with her before we go. Or maybe we should do that after the trip so she can look forward to something fun. I also considered getting web cams so we can see her and she can see us when we talk to her. Anyway, I am just thinking out loud. I know we don't need a web cam. We will all survive. I just want it to be over, partially because I don't know what to expect. Of course I am also hopeful that all this is worth the effort and improves the lives of our boys and our family.
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