Here are some of the kids favorites of the parade. They also liked the other Disney characters, Donald, Minnie, Goofy etc. but I didn't get a good picture of those. If anyone knows how to arrange pictures on blogspot, let me know. Once I get them on here I can't move them.
We decided to go to the parade and then to Memaw and Pop Pop Falcone's house instead. We had a fabulous time at the parade! We were supposed to meet friends of but unfortunatley we we were trapped on different sides of the Parkway. We got really really lucky and just as we walked up to the parade route in front of the Art Museum, a woman asked us if we wanted her tickets to sit up in the bleachers! I almost said no since we hadn't even looked around yet but I am so glad we took them. It was awesome having a seat and being able to see everything so clearly. Bennett was also able to snuggle in and sleep for a little bit too. The kids didn't complain about standing or being tired. It was a little chillier than I expected so I felt bad we had brought Bennett but he survived. The poor third child gets toted everywhere. We even passed him off to a stranger in order to get down from the bleachers.
Then it was off to the Falcone's which was a great time too. Nathan and Libby enjoyed playing the Wii with Aunt Andrea and Uncle Jeff. Bennett liked the mashed potatoes, Nathan enjoyed the cranberry sauce and Libby......the coconut custard pie (who knew she liked coconut???). It was a wonderful day. I am very thankful for the life that we have. I know there are many people out there who are suffering far worse than us. We have a tough situation but we are alright!
And now for a bit of cheesiness...I checked on Nathan tonight a few minutes after he went to bed. He requests that I check on him four times but usually he is asleep at first check. Tonight he was not and I laid down with him. The smile, the pure joy on his face was the most wonderful thing! He wrapped his little arms around my neck and looked like he was in heaven. It continues to amaze me the way in which the relationship with each child is so special and unique. I am not sure how they can each be my favorite but they are each my favorite at the same time. Sorry for the cheese. I'll be back to my angry self in no time!!
Bennett seems to be making a smooth transition to milk based formula. As soon as he is one year old we can switch to pediasure....sigh....I am so tired of the sickening sweet smell of pediasure but hopefully he will like it as much as Nathan. Doctors are always surprised that he not only tolerates it but loves the stuff. We have a "source" for about half of our pediasure supply for Nathan so hopefully she will keep being so kind!
No other news. I have tons of paperwork from Boston that was emailed to me last week. I have to sort through it all and start weighing the boys and tracking what they eat. All the information is overwhelming. I/We get so excited about treatment and then you see all that it requires for our boys. Putting these drugs in the boys bodies and putting them through all the tests...
Thank you so much for all of your continued prayers. We are really praying that we will be heading to Boston in January for baseline testing and medication.
Just a side note regarding the subscription option on the left. I can not see anyone's email who subscribes so no worries if you wish to remain anonymous. All I can view is the number of people who have subscribed.
Some other stuff that built to my being in a funk is Nathan again saying that he wants to be a daddy when he grows up. Truly what am I supposed to say to this? I just go along with it for now. Another is the thought of the holidays coming up and being around alot of family and friends who had children close to and in between Bennett and Nathan. This always causes a lot of anxiety and pain for me. Also, something happened with Libby this week that made me fearful of when Nathan goes to school which will be in 1 1/2 years. She cut her thumb which opening a can the one night. She had a bandaid covering it and two spare bandaids in her backpack but somehow she managed to go through all three of those by the time recess rolled around! She said her friends didn't want to play with her because they said her thumb looked gross. Okay soooo if Libby is shunned for a cut on her finger what chance do my boys have at fitting in with their peers? Mark and I are hoping they will be off-limits in the teasing department. Maybe they will just be so different that it won't be cool to tease them.
I still am adjusting to the idea that Bennett is a repeat of Nathan. Everytime I see his neck getting stuck in a certain position just like Nathan's or when I see the back of his hair turing into the course hair like Nathan, I just am in disbelief. I feel like I tried to defy God when we got pregnant again. Like I just thought, 'I dare you to give me another child with the same thing' and he did! I honestly don't think I thought it was possible, as if I had reached some invisible ceiling on suffering. Sometimes I wonder what my boys would look like if they did not have this disorder. Sometimes I listen to Nathan's four year old chatter from another room and picture a typical little boy, a head taller, two sizes bigger........we will get there. I know we will.
Bennett had his 6 month review on Friday regarding his OT and PT. His OT will be increasing to twice monthly and his PT will continue at weekly. It is really nice that it is done at his school. It makes my life so much easier with scheduling. We are still trying to get new orthotics for Nathan. He (finally!) outgrew the old ones. I know Nathan is short but his feet also seem to be really small. He is in a 6 or 7 which is about 4 sizes lower than other kids his age. One of my friends recently bought her 1 year old almost the same size. Maybe I need to ask the physicians at Boston Childrens' Hospital if that is typical.
Speaking of Boston...we may be going up there in December to begin the intial testing for the boys. It may be the week of Christmas if everything goes as planned. Dr. Garg called from University of Texas (UTSW) and left messages on my cell phone and home phone on Friday. In his message he said "we have made considerable progress towards the clinical trial." I am not sure what that means. I was surprised to hear from him as we have never received a phone call from him. We will have to see what that is about. It was at 3 pm on Friday when I got the messages. I couldn't deal with drama at that time of the week so I have not called him back yet.
I think that is all the updates for now.
The Little Bus by Carolyn Faust Piro
It seems like a few people have the majority of special needs kids! Why is it that some people have repeated trauma while others go through life relatively unscathed? I have always wondered that, even prior to infertility. Just by being in the field of social work I saw people who endured loss after loss and I wondered why.
I am still so happy that Nathan does not have a skull fracture! I can not believe it. It has made me more relaxed knowing that a hematoma doesn't automatically mean a skull fracture. I emailed Dr. Gordon to tell her the good news. Her response was that they would do what they had to do to help our boys! Those are the most wonderful words I have heard in a long time!
I took video today of Libby and Nathan playing in the leaves. Mark made a huge pile at the bottom of the slide, Libby filled the slide with leaves and Nathan slid down the slide into the leaf pile. Libby had her microphone reporting..."As you can see here we have alot of leaves in Philadelphia. My brother Nathan is going to slide down the slide into the leaves." They did weather reports in school which is where she got the idea. It was so funny. I would try to put it on here but that subcription button was enough technology for me today.
So Mark said he can take him down after work today. If you recall, Dr. Gordon told us that the boys cannot start the trial if they have a fracture. I just spoke with her and she said that it could potentially be a problem but she suggested we wait and see. If he or Bennett suffer a fracture during the trial, they would just skip the biphosphinates for a period of three months.
I have been a wreck all day. I just love him so so much and I am tired of him going through all of this stuff. I am tired of him falling and getting hurt. I am tired of this disease/disorder causing such disruption in his little life. He is such a sweetie and doesn't deserve to be at the doctor or hospital so often. I am also tired of putting so much energy into accepting the appearance and developmental delays that my boys have and then something like this happens that really makes it tough.
So to the prayer......if you can all pray that Nathan does not have a skull fracture we would be most grateful. I will update you tonight. Thank you all so much!
And onto another note.....I got my haircut today. It is really really short, too short. I asked for chin length and it is much shorter. Mark said he has never seen my hair so short. Anyway, this is about the kids so let me tell you what happened. I walked into Nathan's classroom for pick-up. He took one look at me and said, "What happened to your hair?" If you've ever seen Nathan he has slopey shoulders already and when he is dissappointed they go down even further. I explained that I got it cut and he started crying. He said he likes my long hair and made me promise to not get it cut off again. Poor guy. I certainly didn't mean to traumatize him!
It is Mark's busy time so I went by myself, but it really was not that bad. It is tiring but nothing like the appointment at the Bone Health Clinic last week. Of course I wish we could go together for these appointments but it just doesn't make sense for Mark to take time off work to spend at the doctor office. If he is going to take time off from work I would much rather be doing something fun. One of the nurses asked Nathan where his Daddy was saying that he is usually with him. Nathan told her he was at work "wight Mom?" Mark doesn't know it yet, but he will have to take Nathan for routine bloodwork at Quest because that is something I can not handle.
Bennett is scheduled to have his second flu shot tomorrow. We are so glad he is getting it because they cancelled Libby's. Bennett has a cold though so I am hoping he can still get the shot. He has a snotty nose and cough but no fever or anything.
Last night at Nathan's school they had a support group for parents with children with disabilities. At the same time they have a sibling group for children 6 and above to discuss having siblings with special needs. I started to have doubts about sending Libby to the sibling group because I really don't know how much of a problem it is for her right now. If it is not an issue then why open a can of worms? I talked with the director and she said the group is pretty low key and Libby wanted to go. She loved it! She wants to go back which makes me really happy! She told Nathan she was going to a meeting to talk about how to deal with him and his special needs. Poor Nathan was quite confused.
I also loved the parent group. I know I talked too much but it was the first time I have been in that kind of setting where people would understand what I am feeling. I almost didn't go. I had been home from picking up the boys for only an hour and the thought of putting three kids back in the car and taking them back out in the cold is just not too inviting. I put a lot of effort into following through with activities that I tell the kids we are going to do which is what motivated me to get out of the house. I am so glad I did! There were maybe a dozen parents there. Several of the families had children with Cerebral Palsy and autism spectrum disorder. I was the only one with two children with special needs. Ding Ding Ding! I actually didn't win a prize. The one family is at the beginning stages of their journey, still trying to figure out a diagnosis, still trying to get the attention of the medical professionals. I felt so deeply for their situation because it is such a confusing and emotional time. I just wanted to take away the pain for the parent(s) because no one should have to deal with these challenges. It made me realize how far I have come in accepting our situation and being more comfortable with the label of being a family with special needs children. I'm still struggling of course, but looking back it has gotten better. Mark came at the end to help me with the kids. He sat in the parent group for only a few minutes so he didn't really get a feel for it. He does not feel the need to purge all of his thoughts and feelings like I do so this is not his cup of tea. One of the drawbacks of a social worker marrying an accountant I guess. Anyway, he is willing to go along with me to these groups if and when they occur in the future. I guess that will have to be enough for now although I feel guilty dragging him to something he does not enjoy. But hey, how much football do I endure watching on television?
Thats all for now. I have lots to do, not much time to do it and even less motivation. Nathan and Bennett have a GI appointment in King of Prussia today at 1:30 and 2pm. That reminds me, I didn't make arrangements for anyone to get Libby off the bus in case I don't make it back by 4:00pm. Hopefully I can make it, otherwise she can go to the neighbors house. Why do I think of these things three hours before appt time?