new stylin outfit!

Denial

I think my happiness hinges on me living in denial. When I am reminded that my boys will get worse instead of better, I start to lose it. This is the best they are going to be. When I imagine other new mothers with their babies, full of hope and not dealing with physical therapy, millions of doctor appointments and several medications daily my heart breaks. I want to be happy for my kids. They deserve me being happy. I just wonder if it would be easier to deal with if we were not going through this on the scars of infertility and the difficult road to adoption. I know. This is the old me wallowing again. It's so confusing because both boys appearances make me sad sometimes. Nathan because he looks so different and Bennett because he looks so normal. He is a beautiful handsome baby and to know that this is the most typical he is going to look is painful. It will only get worse from here.


We went to the local carnival on Saturday night. We had a really good time. Although Nathan was too short (by an inch) to go on many of the rides, I tried to focus on the rides in which he was able to go. He was able to go with Mark and Libby on the spinning bears, by himself on the cars and the bee's which he road three times in a row. He was so happy! I just hugged him and hugged him because he was so cute. I know it sounds cliche and silly, but at that moment (and other moments in the past) I have wished that loving him so deeply and hugging him so tightly could make him all better. Sounds dumb I'm sure but it's something that goes through my mind from time to time.

Yesterday was Bennett's first occupational therapy appt. He is really trying to roll over which is awesome. I was worried that he wasn't even trying. I don't care that he can't do it, only that he is interested! With Nathan we had PT twice weekly and OT once weekly and for Bennett we have PT only weekly and OT monthly. It makes me a little nervous although it is nice not to have therapy three times a week. It just means that we have to do more work at home with him (hint hint Mark).

The appetite stimulant seems to be improving both boys appetites. Bennett is waking up in the middle of the night too eat again. Nathan says "I'm hungry" from time to time which is weird. He has never ever said that in the past. He's been eating 3-4 chicken nuggets or a whole hotdog to give you an idea.

Nathan's development continues to be a source of frustration for me. It really limits what I can do during the day because of closing gates and supervising him at all times. Our 16 year old neighbor has been watching Libby and Nathan for a couple of hours at a time which is a huge help! That way they can have some outside time without me being out there standing behind him all the time. Nothing else new and exciting. Nathan has a cardiology appointment on Thursday afternoon just as a precaution because of the eurythromycin he is taking.

That's it for now!

Today is the Day...

Today is the day that the cells were expected to be done growing and be sent to Texas and Boston for treatment. Mark paged Livia yesterday and Livia said the cells will most likely not be ready for another week and a half. She has been trying to contact TX and Boston regarding us visiting, but she has not heard back from them. Mark asked if that is a sign that they may not be willing to work with us and she said "definitely not." They are most likely just waiting for the cells. I am so anxious now. I can't even tell you how I feel. It's like I am balancing somewhere between sadness and hopefulness. I haven't even considered what will happen if the cells don't respond to the medications because they will. They have to respond. We have to get treatment to stop progression and allow the kids to have normal lives at least while they are here. I feel like I'm on a ferris wheel stuck at the top, waiting to come down so I can get off the ride. Not sure if I should be enjoying the view or panicking.

Another collage!

annoyed

I'm slightly annoyed that I haven't heard back from Livia yet. I have emailed her several times. I guess I will page her tomorrow. I just feel helpless. We are at their mercy to help us through all this. I wish we weren't dependent on them for communication. Mark and I are not the type to cause a stir, but we might have to start soon. I'm sure if she had any information she would get back to me but we still would like hear from someone.

Famous

This afternoon I watched the Friday episode of Oprah that I had DVR'd and it was about special children who had beaten the odds. It was a repeat, but as they say, it was new to me. The one story was about a baby boy with Trisomy 18 who lived for 99 days and his father made a very touching video diary to him. I started thinking that our story is pretty interesting! I wonder when we will be famous? Mark says he doesn't want to be famous, but I think it would be pretty cool to have Nathan sitting in the Oprah chair. She would LOVE him. There would have to be a point to the story, so I'm not sure what that would be. We could be an episode on Discovery Health but that's not enough for me. Maybe after treatment is successful, we can do the talk show circuit. I can hear Oprah now....They were told their sons had a progressive premature aging disorder but with a new treatment.......here they are...Nathan and Bennett Falcoooone!

I do have hope that this treatment works. Nathan has been pretending that he is a Daddy a lot and has said a few times that's what he wants to be when he grows up. Probably because of Libby he is not as into the boy toys as some (although last night he was zooming through the house declaring he was Super Nathan-but that was after having a lot of Hi-C at the movie theater with Daddy). Anyway, sorry for the digression. He has "Baby" which is a Carters bear crib toy his MeMaw Falcone gave him when he was born. He has a bib on him, takes him places, feeds him, puts him in the doll stroller etc. It's pretty cute. We have to make sure this little man gets to be a Dad!

PS: Yes it's the middle of the night, yes I have trouble sleeping. Bennett sleeps fine. I lay (lie, lay???) awake worrying about Bennett, his sister and his brother. I know I shouldn't worry. It is not productive. I am praying for my mind to take a rest. I have to get some sleep so I can make some Father's Day french toast in the morning. I'm sure I will need lots of patience as my two "helpers" argue over how many eggs they each cracked! (laughing as I picture this)

first foods

We fed Bennett rice cereal tonight. Here is a picture of Libby taking a turn at feeding him. He did really well! He didn't spit much out and seemed pretty anxious to eat more. We only gave him a little bit to get him used to the idea. He's been having rice cereal in his bottles so at least there is nothing new for him to react too. Now I guess me move on to the other grains!

I emailed Livia again regarding the status of things. We scheduled Bennett's baptism for July. It's a little late, but there has been alot going on. That's all for now!

PT

Bennett had his first physical therapy session today with Miss Cindy. She is also Nathan's PT at his school. She showed me some things to do with Bennett to help strengthen and loosen him up. The old me would say that I can't believe we have to go through PT again and I can't believe we have to work with him daily to get him to do normal baby stuff. The old me wonders how far off sitting and walking are if our initial goals are merely to have him hold up his head. The old me was so looking forward to having a baby grow and develop without dealing with early intervention appointments. But the new me is glad to get things started early, happy that Miss Cindy comes to the house, grateful that it is a free public program and most of all thrilled that Libby is now older. When Nathan was little and receiving PT in the home, Libby was around 3 years old. She wanted to be the center of attention and didn't understand why people were coming to play with Nathan and not her. The therapists did their best to include her but it didn't work out so well. This was much much better. Libby was excellent and Nathan was napping.

Nathan had PT tonight at Theraplay. I was trying to see how an evening appointment would work, waiting for Mark to get home and taking Nathan over from 6-7. I didn't feel like going out, but once I was out it went well. It is so much fun talking to Nathan one on one (This must be the new me!). He is so funny. It's really the age. I love spending time with Libby one on one too, hearing all their thoughts and how they phrase things. They are so sweet. I am settling into the "special needs mom" role and have even considered attending a group. I like the new me! I didn't even let the sight of a HUMONGOUS six month old at Theraplay tonight uspet me! The flag football signs I saw on the way home for ages 4-10 almost got to me but I didn't let them put me in a bad mood!

Dr. Lockman

Bennett had his 6 month check up today. He weighed 11 pounds 10 ounces. He is on the bottom of the charts but keeping his own pace. Dr. Lockman took out both boys stitches. He did it so quickly, much better than me and Mark. Overall it was a two hour ordeal. Libby was excellent and Nathan was hmmm not so good. He was talking while Dr. Lockman was talking, hanging on my leg and poor Libby was trying to get him back in line to no avail. She got to come with me to Target tonight and was allowed to pick out a small toy as a reward. She picked a bug catcher, which is really cute. Very Libby. Oh yes and Dr. Lockman said we could start him on rice cereal so maybe we will do that tonight.

Mark did all the paperwork for Bennett to receive medical assistance. He also scheduled an appointment with cardiology because Dr. Boyle wants him to have an EKG before going on the Erythromycin for the delayed stomach emptying. I still need to check on the status of scheduling a sleep study. That would check for respiratory issues which are part of the disorder. I also have to schedule Bennett's 9 month check up and Nathan's 4 year check up.


No word from Livia about site visits to Boston or Texas. I sometimes wonder if other parents in this situation would be doing things differently. Would they be knocking down doors and demanding treatment now? Mark and I are pretty laid back and perhaps we accept no for an answer too easily.

Boring Blog

So my blog is going to be boring from now on because I have a new positive attitude! No more wallowing. No more self-pity and no more negativity! I am in a new positive place thanks to reading several books by Norman Vincent Peale and writing down bible verses on index cards. Even the Duggar family didn't annoy me this morning when they appeared on the Today show. Nathan and Bennett are going to get the treatment they need and they are going to get better. I know this for sure.

Today is Bennett's 6 month check up. I'm hoping he will take both Bennett and Nathan's stitches. Otherwise we may have to bug our neighbor Dr. Phil for Nathan's. We took each other's out yesterday and they seem to be fine. I couldn't stop laughing when I was taking out Mark's and Mark kept saying "I think I got it all" when he took out mine. It was quite amusing. The kids got a kick out of the whole production. This is why we think it would be best if a professional took out the boys stitches.

Nathan has been in a mood this morning (not complaining). He needs an attitude adjustment today. He is even fussing that the cat was giving him "mean looks!"

the poor third child

Everyone jokes about how the poor third child really does not get the attention he/she deserves. Fewer pictures, no mommy and me classes etc. Here is a picture of Bennett. He was happily laying on the floor watching the Phillies and his mirror. Shortly therafter, I went to check on him and found him like this....his mirror toy had fallen on him and he was asleep. Unfortunately I'm not sure which happened first. Very sad...at least he got out of his pjs today which is more than I can say for some days. Don't call Child Protective Services. We do take good care of him!

Rough Morning

I had a rough morning this morning. I'm not sure if it was being around all those babies and kids yesterday or what. It's also difficult at those types of gatherings because no one (really not one person) says anything to me about the "situation" because they either don't know what to say or don't want to upset me. So I spend much of the time wondering who knows and who doesn't know and why are we all pretending that nothing is wrong. It's just such a tough situation for everyone. I complained to Mark about it and he doesn't have that need for people to acknowledge the "situation." That seems so foreign to me but just a reminder that we all deal with things differently. I feel like I have become very selfish with this whole thing and only worry about how things affect me and my feelings. Take Nathan for example. He was happy as a clam yesterday but one of the toughest things was watching one little boy Nathan's age play wiffle ball. Meanwhile Nathan is walking around with his Baby Jaguar from Diego. Once again I said something to Mark and once again he pointed out that it was not bothering Nathan. He didn't care, but it bothered me. He did have a difficult time waiting to play on the trampoline because he can't go on with other kids.

I'm starting to become concerned with how much we baby Nathan. I realizing that it will affect his emotional, social and cognitive development and maturity. For some reason as adults, our expectations are based on a child's size. I've seen it often with bigger kids in classroom settings and I know that we have to constantly aware of Nathan's chronological age.


We received a letter yesterday that we opened this morning. It was from Dr. Yan and outlined the biopsy appointment. In it, Dr. Yan pointed out an opening of the posterior fontanelle that was not previously noted in x-rays. It means the presence of wormian bones in his skull just like Nathans. I am bummed because I was not in the room when this discussion took place so this is news to me. Mark said he noticed it but I had not noticed.

Today is day 10, the day the sutures are supposed to come out. We have four suture removal kits; however, in true Mark and Phyllis fashion, we have lost the instruction page they gave us. Dr. Lockman can hopefully take out Nathan and Bennetts tomorrow at Bennett's 6 month check-up; however, Mark and I may have to Google instructions for ourselves. Nathan and Bennett both have colds which seem to be a bit worse today.

Haircut

well, I finally went and got my haircut after more than six months. I was dreading this event because of all that has happened in the last 6 months. Who else has to pray for strength on the way to get a haircut? When the poor hairdresser asked, "So how have things been going?"; boy was she in for an earful! I explained in an abbreviated version. She is very nice and lets me sit quietly while I get my hair cut. In addition to the excellent haircuts, I have always liked this about her and now more than ever I appreciate not having to make small talk.

Nothing else new and exciting. Nathan's hematoma is going down. We never got an cat scan or anything. I've been a nervous wreck about him falling ever since then. On Thursday night I met a friend at Chick Fil A and Nathan played in the little indoor playground with Libby and their friend. I was sooo happy that he was able to manuever in there. There were no other kids which was nice.

Next week Bennett begins physical therapy at home. His physical therapist came on Friday thinking that we had an appointment scheduled and we were at Nathan's PT appointment. She was worried that something happened because she said that I not the type of person to miss an appointment. That was funny to hear because I feel so unorganized with appointments. At least someone thinks I have it together!

Next week, Monday is Bennett's 6 month check-up. I'll be taking all three children as I was not organized enough to schedule before the kids got out of school! Tuesday, Bennett has PT at home and Nathan has PT at Theraplay. I don't think we have anything the rest of the week. Mark applied for MA for Bennett so I am going to schedule an evaluation for Bennett at Theraplay too. The more PT the better!

Also, another date to look forward to is October 2009 when the results of PRF's clinical trial with children with progeria is due. The research study ended last month and I am anxious to learn if the treatment was successful.

We are now headed up to New York to visit Mark's family. There will be three healthy babies there who were all born around the same time or after Bennett. I am so nervous. It's so difficult to see healthy babies who are bigger than Bennett and most likely doing more things. I am also praying for strength for this outing (rough day). There are also kids close in age to Nathan so I'm sure I will be obsessing about his development too. Mark offered to take the kids which is tempting, but I cannot stay home from these events because we have to keep things normal for the kids.

6-9 months

No that is not the size clothes Bennett is wearing. That is Livia's "best guess" at when treatment would begin for the boys. The cells take about 3 weeks to grow out, thus I am keeping my ticker up top. Then she will send them to Texas and Boston. Yayyyy!! I can handle that! That would be between December and April of next year. Bennett would be between a year and 18 months. Nathan will be 4 1/2. Please keep those positive thoughts and prayers coming! Good things are happening now!

back together again..

Well, Bennett and I are back in love again! We fell asleep on the couch last night (exciting life we have). Mark took this picture. I tried to fuzzy myself and focus on him. I wish the pacifier ribbon & toy wasn't in his face. His little mouth is so cute!
My sister Donna had her baby girl yesterday, Allison Joy! Congratulations!! Since this blog is all about me, I'll be honest and tell you it was difficult for me. Sorry Donna. It's just difficult hearing of another full-term birth and knowing that her baby will go home with her. For me it is a reminder of the loss that I have never had that experience. But Nathan and I each had a Klondike bar at 10:00AM, hung out with my sister Susan, talked with an online selling group to which I belong, said alot of prayers and I am much feeling better. I am very thankful that we have this treatment to look forward to. I am very hopeful for what the future will bring for the boys.

Me and Bennett

Here is a picture of me and Bennett this morning. I'm very frustrated with the 6 month long infant stage. I'm not a fan of the baby stage anyway, so to just have him be stagnant in this stage is blaah. Since I was mad at him, Mark put him at the other end of the couch!! LOL (for people who are on the older side, that means "laugh out loud") Please excuse my appearance as we skipped church today and I didn't shower. I was listing clothes on Ebay and he was just watching television.

A little sad....

I'm a little sad tonight and don't know why. Maybe it's because Nathan is almost four. Age four seems to be the magic age that you can start playing T-ball, soccer etc. At four you should be able to get up and down the steps freely, get your pajamas, play outside without fear of getting a head injury. This last hematoma was from falling off the swing last week. Although it is his third hematoma, it is the first one that cannot be explained away. Sure most typical kids don't get a hematoma from falling down the steps, but we rationalized that he fell with such force because of leaning on the gate. This most recent one means that even when playing outside he has to be watched like a hawk. I will have to be right behind him when he goes up the ladder for the slide now. Age four is also one year away from five in which he should be able to start kindergarten.

I may be sad because Nathan continues to struggle with constipation and screams when he is trying to go. (sorry about the graphic details) I may be sad because Bennett has been here for five and a half months and still cannot do anything. I tried to put him in the baby swing outside and he just screamed and slumped. To me he seems stiffer than Nathan ever was, especially his neck. The road to having him be able to simply roll over or sit up seems so long. I can't believe the work involved in getting our babies to do regular things.

I am so hopeful about this clinical trial. I really hope that things progress and their conditions improve. It's amazing how one minute I feel full of hope and happiness and the next minute I feel so negative and hopeless. I feel so good that we are moving forward, that Mark and I have such a great relationship, that I am a mom to three. Then I see a healthy babies and kids and realize that 99% of parents are not dealing with things like this. I just can't believe we are having to deal with this situation, make all these decisions and explain all of this to our kids. It is a huge responsibility. I feel like we are trying to make a really bad situation a little bit better and sometimes I question the point. Meanwhile we are going to be pumping them full of medications. Years ago when University of Penn was in trouble for the gene replacement therapy program, I, along with many others, was horrified. How could they interfere with God's plan? I felt bad for the parents, that they could not just accept their situations. Now I totally understand the desperation of wanting your babies to be healthy. I believe there is a reason for this all. I have to. I believe that whatever Nathan and Bennett go through will be successful, I just don't know to what degree.

I realized that yesterday was the 12th anniversary of Mark and I met. (Is that the correct grammar? I just learned that my high school English teacher has been checking in so now I have to be careful.) Anyway, I am so glad we met despite all that we have been through since then. (I told Mark it was a bad omen when they bulldozed the restaurant where we first met.) Our 10 year wedding anniversary this summer. We had considered taking a little mini vacation but Mark won't have enough vacation time after going to Texas and Boston. We are determined to make those trips fun though and do some other things in the areas. It will be a great excuse for us to travel. We are not good planners, so knowing us the whole summer would go by and we would have no vacation plans anyway. This will force us to do so.

So a short synopsis of GI is this: Bennett has fallen off the curve significantly. Nathan weighed 24 pounds 8 ounces with clothes on which is pretty good. I asked Dr. Boyle about putting both boys on Periactin which is the appetite stimulant. He agreed. For Nathan, there was no mention of a feeding tube. We discussed the stomach emptying study and he said it is slow, but not drastically slow. He is prescribing Eurythomycin which speeds the emptying of the stomach. Nathan seems to be doing fine off of the Axid which is good. As far as the constipation, he thinks we should split up the miralax dose. I told him we already tried that before. Somehow we had a communication breakdown and despite begging him again to try something else to help the situation, he left all else the same. Although Bennett continues to exhibit symptoms of reflux, Dr. Boyle was not going to change anything. He handed me the order to continue the axid and lactulose and was ready to walk out when I said something along the lines of...no no no, he is not doing well, he is not gaining weight, he is in pain, he is only eating three ounces at a time, you have to change something! So he suggested splitting the lactulose dose and if that doesn't help within two weeks, we can call and have him switched to prevacid. I will not schedule appointments back to back like that again. It was too much for me. I'd rather make a couple half-day trips than be there all day.

Dermatology, Genetics, GI Oh My!!

Well, I may just cover dermatology and genetics. I'll see how much energy I have. Anyway, dermatology was at 10:00AM. The mood was relaxed and jovial, with the exception of Dr. Yan of course. I'm pretty sure he doesn't have a sense of humor. He didn't even crack a smile when I asked for a massage while lying face down on the table. Oh well, the others did. We had a lot of down time waiting for each persons turn so we chatted about personal things in addition to the medical stuff. The nurse, Kathy, who was also very nice and thought we were especially funny, brought Nathan a DVD player and put on Thomas for him. The actual biopsy was done in a room adjacent to the exam room. I went first, then Mark, then Mark took Bennett and then I took Nathan. Each one took only a few minutes. He put a shot of numbing stuff in and it numbed the skin instantly on the area of the back. The size of the biopsy was a little bit smaller than a pencil eraser and then he put one stitch in it. Bennett cried of course and Nathan cried too. I thought the laidicane we put on them at home would numb it enough that they wouldn't feel the needle, but apparently it just "takes the edge off."

Our first impression of Dr. Yan, now almost three years ago, continues to be accurate. He really has a knack for talking and saying nothing. I feel like we cannot get a straight answer from him. I ask him how the numbing stuff works so quickly and why it doesn't take a while to take affect like Novocaine. He answered me, but I really have no idea what he said. He also talked about a medication to provide mild improvement with the tightness of the skin; however, we won't pursue that while doing the clinical trial. So after the biopsies, Dr. Yan left and Dr. Zackai and Livia (I guess I should call her Dr. Medne out of respect, but she refers to herself as Livia). So we talked to them for quite some time. They gave the impression that they were planning on sitting there until we were satisfied that all of our questions were answered.

So what we gathered from the meeting. In addition to Boston and France, Dr. Z and Dr. M are now communicating with a place in Texas that is working on clinical trials for this specific condition. Some of the conversation is a blurr, but I believe the two Japanese girls have traveled to Texas and although they have not been treated, they have had biopsies and are treating the cells with the three medications. The one problem with Boston is that they may not be approved to treat the boys with all three medications. They may not be able to treat them with FTI's; however, Dr. M thinks the FTI may not be necessary because the other two may be enough. SHe seems to be leaning towards us going to Boston. Dr. Z seems to be leaning towards Texas. Dr. M was receiving emails throughout the morning while we were there, so things are continually changing. By the end of the day when Mark spoke to her about the hematoma, she had decided they will grow out the cells right at CHOP. Dr. M said she would find a research grant to fund this process. Then the cells would go to Baltimore where Dr. Francis Collins would do the actual testing of the medications on the cells. Dr. Collins is the one who discovered this gene mutation and the head of the Human Genome Project. So our next step is to visit both Texas and Boston and make an educated decision on where we want to go for trial treatment after the cells are treated. Although they tried to remain impartial I get the sense that Dr. Z favors Texas and Dr. M favors Boston. I hope we are smart enough to choose the right one. It's a lot of pressure when we don't even understand half of the information. They are going to facilitate setting up a visit for us. Another part of this that I didn't think about is that any clincial trials have to be approved first by the FDA and I dont' think Texas has been through that process.

While we were there chatting, Dr. M brought up a presentation that she did about the boys. She was trying to show us the mice that have improved with treatment. When we saw the picture of the boys she explained that she had done a paper "to show how stupid we were in the beginning." I said that I always thought Nathan looked like the kids with progeria. Dr. M said "You were right." The picture of the mice was three mice, one with no gene change, one with the gene change that Nathan and Bennett have and the third treated with the three medications. The first mouse obviously looked like a normal mouse, the second was about half the size with very sparse hair and the third was a size in between and the hair looked almost normal. It was interesting.

Other things we learned: I asked about was possible medication to alleviate the joint stiffness. They said that the joint stiffness is due to stiff skin. It is not arthritis. They also did bloodwork to determine which one of us has which gene change that together caused the syndrome. I also asked about our little embryos. We have been continuing to pay for storage until we find out if they could be used in some way to determine treatment for Bennett and Nathan. Dr. M said she will definitely get back to us.

I asked Dr. M and Dr. Z why they are doing all this for us when we are not paying them, insurance is not paying them etc. They responded that we came to them almost 3 years ago and they are going to help us. I thanked them for being so kind to us, always treating us respectfully and doing so much to advocate for us as well as explain things. I started to cry so I had to stop. I even think Mark got a little teary! I also asked Dr. M later if she had learned a lot from the boys and she said yes, alot but she clarified that it is not a fun way to learn. From the beginning, she has been the most empathetic towards us. If you look back at my entry from the first day we heard the word "progeria" she was the only one who offered to hold Nathan and took me to a private space while I screamed in agony that day.

Oh my gosh, I've been working on this for over an hour. I'm not sure I can get to GI tonight since it is after 11. I'll finish it tomorrow. Bennett is starting physical therapy with Nathan's school physical therapist on June 16th so it's great to get that underway.

CHOP day

Everything went fine today. I went to breakfast with Libby at school and Aunt Kate, Abby and Dorothy came to her show. I wanted to stay so badly and hear a bunch of elementary school kids sing, instead of going to CHOP to talk about joint contractures, genes, clinical trials etc. ahhh. I am so exhausted after all of it so I will not be able to fill you in on all the details. Dr. Yan did the biopsies; however, Livia and Dr. Zackai were there to meet with us. They went through our options and explained alot of things to us, probably about 10% of which we understood. Everyone was very very nice. We went straight from dermatology to GI with no time in between to even eat lunch. Mark went back to work because I insisted I was fine taking the boys over to CHOP by myself, but it ended up being much more difficult than anticipated. Poor Nathan had not had lunch and our appt was at 1:00PM. When I checked in I asked if Dr. B was running behind schedule because if he was, I wanted to run down and get Nathan something to eat and come right back. They said he was on schedule. The waiting room had no toys, books or anything. They took us back to the room right away. I was trying to undress both kids, Bennett was crying, I'm sweating ughhh. It was stressful. Dr. Boyle did not see the boys until 2:30. For over an hour they had two little kids waiting in a room with no toys or any other distractions. This is a children's hospital!! Then I discovered that Nathan has another hematoma from falling off the swing a few days ago so I called Mark who called Livia.....Then Libby was supposed to go home on a friends bus, but the school does not allow that. They didn't start calling us until 3:30 when they were putting her on her regular bus to go home. She was confused obviously. Mark had to call some neighbors to get her off the bus. Anyway, it has been a long day so I will fill you in on the medical details when I am more clear headed and not so exhausted. Thanks for thinking of us today.

Tomorrow

Libby's eye exam went well yesterday. She did a great job and the eye doctor was really very nice. On the way there she asked if it was a girl or boy doctor. When I told her it was a girl doctor she said she thought boy doctors are better. She couldn't tell me where she got this convoluted idea, but I quickly set her straight. There are no issues with her eyes and the doctor does not see that she is on her way to needing glasses. She asked if there is a family history of glaucoma and I almost said yes because my grandfather and sister have/had glaucoma. Then I said, "We don't know. She's adopted." Uggh! I was kicking myself because to Libby that must sound so harsh. All I would have had to say was no we don't know of any family history of glaucoma. Not that she should be ashamed of being adopted, I just didn't need to say it like that in that situation. Anyway, just a dumb moment by me. I think I was caught off guard because I forgot she wasn't biologically related for a second. It was very nice taking a healthy child to semi-routine doctor visits though! She had her pupils dilated and she thought that helped her to concentrate the rest of the day in school. She thought she might need to get some of those drops to help her focus!! She is full of bright ideas! This morning she started putting her soccer shin guards on for school because she thought it might help her run better in gym class!

Tomorrow is the big biopsy day! It is going to be a crazy day. I still did not hear anything from Dr. Gordon at PRF or Livia regarding my question of a timeline and why we can't go straight to the treatment. In the morning the biopsies are at Dermatology which is now on Chestnut Street. I believe Livia is coming over to ensure that the biopsies are done correctly. Then in the afternoon I am taking the boys over to CHOP for their GI appointments. It will be a long day physically and emotionally for us.