Today Nathan had anesthesiology later in the day physical therapy. The anesthesiology was to get ready for Monday's endocsopy. He weighed 23 pounds 1 ounce, the same as ever. I think he was 34 inches tall. He is so so skinny it is ridiculous. Tonight his 18-24 month jeans just fell completely down. His ankles honestly look like little twigs. His weight has remained unchanged since starting the duocal which is not a good sign. It might mean he just can't gain weight regardless of how much he eats which is what Mark thinks. I keep thinking if he eats more he will definitley gain weight. Now I'm the one who is being "hopeful." It does worry me that he will be smaller than we expected. What if he doesn't even make it to four feet??
Anyway, I digress from the appt with anesthesiology. It was basically just a review of his history and information about what to expect on Monday. It was painful as usual. The nurse had a student with her of course. The student was very nice; however, the nurse called her over to look at Nathan's fingers and she literally gasped! I felt like screaming "he is not a freak show!" I wonder if some day I will just do that and I wonder what will happen. I know they have to learn, but it just is so uncomfortable as a parent. The nurse then went on to ask questions that were seemingly unrelated to administering anesthesia, questions about his eating habits, whether or not he receives physical therapy and on and on. Finally she looked in his mouth and saw the high arched palate again motioning the student over to get a look. She asked me if anyone had told us he has a high arched palate, I said yes, why. Her response was that highly arched palate is linked to having a genetic disorder. Acting as if I didn't know the answer, I asked if that had anything to do with anesthesia and she said no. I guess it's just that every medical professional you meet wants to hear the whole story and I get tired of repeating it. I get tired of the curiosity.
Anyway, Nathan has his endoscopy on Monday at 9:30AM. Dr. Boyle-GI doesn't expect to find anything with the biopsy, but it is just something they have to do to rule out problems. Who knows, Nathan is full of surprises, maybe they will find something!
I ran into a couple other mothers I knew and of course they say, "How are you?" I don't know quite how to respond. Do I smile and lie or tell them the truth. With one mom I told her what was going on and she didn't seem to know how to respond so I guess from now on I will smile and lie. I wish I could just put out a bulletin to everyone with whom I may come in contact telling them what is going on so I don't have to explain it to everyone individually. I have been putting off simple things like a haircut because I don't feel like answering "How is the baby doing?"
When Nathan was diagnosed we still thought we had the hope of having another baby, going full term and having a typcial growing and developing baby. Now that hope is gone because we won't be having anymore babies. How do I let that dream go? I am the worst when faced with a roadblock, it makes me want something even more. How can you want something so badly. How can it hurt so deeply. I wonder how many people in the world have felt this kind of pain. Probably more than I know. Every waking minute of every day is painful for me. Especially when I see his legs pulled up like Nathan's were. I can't believe we have to get physical therapy again.
Right now I am torturing myself by allowing my daughter to watch the Baby Story which is her favorite show. Of course the mom is 5 days overdue! There are also commercials on TLC for those dopey shows about the families with 18 kids!
I wonder if the normal x-ray is just a tease. I hope not. I worry that it is just happening in small steps so that I don't lose my mind. Each step I let go of a little more hope.
People on Sunday asked what specifically to pray for and honestly I don't know. I would love to pray for a miracle cure for the boys and have them be normal or as close to normal as possible. Is that something we are allowed to prayer for? God is capable of anything. In the meantime I would ask people to pray for weight gain for both boys, strength for me, no skeletal dysplasia for Bennett, successful physical therapy for Bennett, running and jumping for Nathan and for Libby. I pray that I can be happy for my husband, Libby, Nathan and Bennett.
Speaking of husbands, that was the other question someone asked me over the weekend. How is Mark handling all of this? and How are we doing as a couple? Mark is able to accept whatever Bennett has although he is still hoping that he has a much milder version of Nathan's disorder. As far as us, Mark is just worried about me. He feels badly that I have been dealt yet another blow and was not able to fullfill my dream of having a full-term normal biological baby. He just wants me to be happy. We are good together and will not let this ruin us as a couple. We have been married ten years this July and although we have been through alot since year 3 of the marriage we are stronger than ever. He is very patient and strong and has been wonderful, especially with this latest hurdle.
Everytime I post, I start out with one or two thoughts and think it is going to be a short one. It almost always turns out to be a long and rambling sentiment. I apologize.
Yesterday was the prayer service at the church I grew up in, Bellevue Presbyterian. It was wonderful. I was not uncomfortable once I got there and saw all of the familiar faces. I am so grateful for everyone who came and prayed for our family and appreciate the continued prayers. I am still struggling so much. I want to be happy again, but this just seems like this will have lifelong implications that will continue to cause sadness.
A doctor in Strasburg PA was again brought up yesterday. I don't remember his name, Milton Berle is the only name that comes to mind, but I know he was an actor. It sounds like he is the Dr. House of genetics. Anyway, we are trying to be open about getting a second opinion from him. It seems overwhelming right now, but maybe in a month or two. My father asked, "what could it hurt?" and my answer is that we could get our hopes up again. There are only so many times you can go up and down. I think we have just had the thought that CHOP is the best and we should just accept that they are doing their best rather than be in denial and chase after something that doesn't exist.
Bennett has been struggling with the eating lately. He continues to have alot of belly pain. He drinks about an ounce and then starts crying and refusing the bottle. It is so frustrating and his weight gain has slowed. He is at 8 pounds 2 ounces. We scheduled an appt with the pediatrician for Thursday to talk about possibly changing his zantac to something else.
Anyway, today we are headed to Gap to my parents house and my home church where they are having a special prayer service for our family. I am very grateful for this, but uncomfortable too. It is difficult to swallow our pride and accept the help and attention from people. I am very nervous about being there. Actually just getting dressed up is an overwhelming thought right now. I tried to explain to Libby that we are going to Deer Mee Maw and Pop Pop's church where lots of people are going to be praying for our family. I have started to talk to her about Bennett having the same thing as Nathan. About a month ago, out of the blue, she asked if Bennett is also going to look different when he grows up. I feel badly that on top of adoption issues, she will have to deal with having brothers that will set her apart from her peers. I hope it makes her a stronger and more compassionate person rather than making her feel like an outsider.
On Friday Golf Mee Maw took Nathan to physical therapy and I took Bennett to get his synagis shot. I fell apart at the doctors office and ended up in tears. Everywhere there are beautiful fat babies in carriers, chubby preschoolers with full heads of hair and happy moms dragging two or three kids behind them. I can't believe that Bennett will not be a fat baby. I can't believe my dream of that is over. Last week I still had hope and now it is all gone. I have such a tough road ahead of me because it will take a while to sink in. Right now Bennett is really not supposed to be doing much developmentally. Sure I get sad when I see his legs and belly, but it will be more and more difficult as we deal with therapies and stretching and being in the same size clothing month after month. Plus several people close to us are having babies, including my sister. It will be so hard to watch others to give birth to full term babies. It just seems like everyone else does.
I was supposed to take Nathan back down to CHOP on Friday for an appointment with anesthesiology, but I cancelled. It would have been my third day in a row down there and I just didn't have the energy to do it.
On a positive note, Nathan just finished getting himself dressed for the first time by himself! Everything is on backwards (there are no longer tags in kids clothes and he had a 50/50 shot) but he got undressed and put on a pull-up, sweatpants and a t-shirt. This is major progress for him! Hopefully he won't throw fits when we tell him we have to put something nicer on him. Well I'm sure he will, but he is three. I wish I could post a picture of him on here in his pull-up. You wouldn't believe how skinny he is. You have to see it to really understand. I'm pretty sure Mark would think it was cruel to post a picture like that of Nathan.
So there it is, an update of the Falcone Family in Crisis!
Tomorrow it is physical therapy, Nathan's appointment with anesthesiology and Bennett's RSV vaccine.
Dr. Yan went through all the genetic stuff, but to be honest it was way over our heads. They did genetic bloodwork for both kids. We did express concerns that we do not want to continue trying to find a diagnosis for our kids if it is purely for research benefits. Dr. Yan agreed and said that at this point we are still trying to determine a diagnosis so that we can be prepared for any complications that may be associated with their diagnosis. Anyway, he went on to explain a bunch of stuff about the pycno mutation in Nathan and what it means if Bennett has the same mutation and lots of other confusing stuff that we did not understand. Basically it is puzzling that Bennett has the same skin issues and was highly unlikely so we may have just been "unlucky" in his words.
So I don't know how I feel about all this. I am happy about the radiological study, but hope that it is not just delaying the inevitable. I am not looking forward to early intervention again, therapy twice a week etc. I am somehow hoping that maybe just maybe Bennett will develop a little faster than Nathan did, that he will put on more weight than Nathan, that he will not be limited by his skin and that he will get his teeth before one year of age. I guess I am right there with Mark still holding out hope for the only things left. I did cry a little, not sobbing, just crying when we found out for sure that the skin issues couldn't be explained away and that I will have to deal with early intervention again. Overall I feel kind of numb.
So Mark is still hopeful that this is all a fluke and can be contributed to prematurity. Hopeful or as I like to call it "in denial." I was sitting there in disbelief, disbelief that this is my life carved out for me, being the parent of two children with an unknown genetic disorder that no one can figure out. If I am accepting that Bennett has what Nathan has, I just can't believe that our boys will not run and jump and play sports like other kids their age. At home, Nathan is so normal. He is so cute and funny and personable. He is a happy delightful little boy, but I know that out in the great wide world he is so different. He will be the odd kid in his class, the one that everyone is friendly towards in a kind sort of way, but no one is inviting to their house to hang out. How tall will he be? Can we get him to 5 feet? His or their medical future is also a big unknown. How will his or their bones change? Will surgery be necessary? I wish I could just be a mom and enjoy my kids the way that others are doing. I love them so much and enjoy the mom parts of my life, waiting at the bus stop, taking walks, helping at school, laughing at the dinner table and hearing them playing pretend. Instead my focus is on appointments and the tremendous sense of loss I have been experiencing due to infertility, prematurity and this now unknown genetic disorder that has taken away normalcy in our family.
If Bennett has this, (which lets face it-all signs point to yes), if he has this, how will I get through all the appointments the first year or two? How will I get through him being in the same size clothes month after month. I know I keep bringing up the clothes issue, but as a parent it is a reflection of ourselves as our kids get bigger and bigger and outgrowing clothes is the major indicator.
In other news, I got Nathan's mafos today. He definitely has a spring in his step when he is wearing them. You can't really see them when he has pants on, but in the summer they will be noticeable. The PT also wants him to receive Occupational Therapy for his fine motor skills. His endoscopy is scheduled for March 3rd with an anesthesiology appointment on Friday afternoon (he has PT that morning).
Once again, these are just completely random thoughts that I have running through my head. Please don't judge me. I am merely laying my heart out here for all of my friends and family in hopes that you will be able to share in my pain. What a great friend I am right? Genetics just called and they are going to see Bennett tomorrow at 4:00PM so I guess we will know more then. If God is here, we are praying to you for a miracle! Hoping it will not be another CHOP day from hell like the one back on September 11 2006.
I don't know how I am going to go on. I don't want to kill myself because my kids need me, but I want to fast forward through the rest of my life. I can't believe I am the mother of not one but two special needs children-two kids with a skelatal dysplasia that has yet to be accurately diagnosed, that no one else in the universe has. This is more than I can bear. It feels as if God keeps taking and taking from us. Why does everyone else have two, three, four and more healthy biological kids and we were not even allowed to have one. How am I going to care for Bennett knowing he is not going to fill out and blossom like a normal baby. Our Libby is the only one of our three children that is going to be able to run and jump like a normal kid? That is insane? I see the three year old neighbor kid running, jumping, riding his bike and going up and down the steps and I want to scream!! How am I ever going to be around my friends and sisters again without being jealous of their normal matching children. Oh God please help me! I am pretty sure I will never be able to find happiness again. Please tell me this isn't true. Dr. Lockman could be wrong right? Meanwhile, Mark's life was completely normal until I came along. He should have run full speed when he saw me. He could be off somewhere married to someone else, having normal children instead of on his way home from work right now to cry with me.
With all this pain, I have to keep up a normal face for Libby's sake-Nathan too, but Libby is the more perceptive sensitive one of the two. Her birthday is coming up and I have to plan something for that. I have to figure out when Bennett will be baptized and plan something for that. How am I supposed to focus on all this stuff when I am dying inside.
I was able to schedule a genetics appointment for both boys on March 30th which is not as bad as I expected. Hopefully it will be here before we know it. Of course with it being six weeks away, Bennett's appearance could change by then. Hopefully it will be good news at the appointment.
Bennett had his eye exam on Friday and the doctor said his eyes look good. He said his one eye is still not focusing so if it doesn't resolve by June we are supposed to call him. Otherwise he does not need to see him until he is a year old. He has his two month check-up with Dr. Lockman on Tuesday. I am wondering if he will give us some reassurance about Bennett's features that we thought may be like Nathan's. Bennett is gaining weight still. This morning he was 8 pounds 2 ounces. I looked back at Nathan's info and he was up to 13 pounds before his weight gain slowed.
I took Bennett to see the pediatrician on Tuesday because of all his pain while eating and his gas. Dr. Lockman said his dose of Zantac is simply not high enough. Bennett gained 50% of his weight from when the medication was prescribed. He is now 7 pounds 6 ounces! So we will see if that works and hope he is a happier baby. Dr. Lockman didn't notice that Bennett was in the regular car seat. Let me tell you, it is so much nicer. He is all snuggly warm in that cover thing! Nathan is surviving his latest head trauma. He has to have a follow up with the neurosurgeon which we have to schedule. We also have to call and schedule with the feeding clinic and schedule the endoscopy. Dr. Boyle said they would call within three days to schedule and it has now been almost two weeks. I ordered a product last week called Duocal. It is another supplement for weight gain that Dr. Boyle pulled out of his hat. It is a powder that has no flavor and can be added to alot of different things. He gave us a couple samples, and Nathan does not notice it in his food. He didn't like the Benecalorie. It didn't dissolve and things and he could taste it. Unfortunately we have a couple cases left. The duocal is equally expensive, $100 but I have found a couple reviews from parents who said it really works so lets hope so. We are out of samples so I can 't wait for it to arrive and put it in everything he eats or drinks.
We still have not gotton the orthotics either. It snowed the day I was supposed to go to his school to learn how to use them and the physical therapist has not gotten back to me about an alternate date. It seems like it takes so long for everything to happen.
Bennett has his third eye exam on Wednesday. He seems to be looking around more and stopping on faces, which is great.
Nathan still has his hematoma. It got really big and was the same size for a couple days. Today it appears to be a bit smaller. I'm very afraid of him falling while he has the hematoma. It is difficulty finding the balance between being cautious yet still allowing him to become stronger and more independent.
Last Wednesday night, Nathan was leaning on the gate at the top of the steps and it gave way. He fell down the steps, about two thirds of the way before Mark caught him. Mark saw him tumble down and hit his head. He cried immediately did not lose consciousness. He had a scrape on his head, but nothing else unusual. We were planning on taking him to the emergency room, but then we were watching him being goofy with his sister, it seemed unnecessary taking him to the emergency room. We called the pediatrician and the doctor on call talked was not concerned. Fast forward to Sunday morning and while Mark was giving him a bath he noticed that Nathan now had a hematoma. I took the kids to Sunday School while Mark called the pediatrician and waited for them to call back. Needless to say, I wasn't much help at Sunday School. The pediatrician on call was again not concerned and recommended we come into the office on Monday morning. I took Nathan over this morning and Dr. Lockman said it is a "pretty significant hematoma" He recommended we take him down to CHOP emergency room and see a neurosurgeon. It just never ends with this kid! I'm beginning to worry about all the radiation, let alone the head trauma! I feel so bad also that he spends so much time in doctor's offices. He was supposed to have a playdate with his friend Julia today and instead he is sitting all day waiting to get his head checked at a doctors office and then a hospital.
About Bennett-He is doing well, gaining weight nicely. He is up to 7 pounds 4 ounces. He is of course full term now. This wednesday was my due date! We took him out of the car bed and put him in the carseat. This decision was not based on any professional recomendation, just our own assessment of his neck strength. His first trip was on Friday and I am happy to report that he survived! Mark asked me to call him when I got to my destination which I did. I didn't realize that I had the phone on speaker and the people in the elevator couldn't help but laugh when Mark said "Is he alive?" Bennett does have a lot of belly pain, screaming crying gas belly pain. It does not last very long but when it happens I feel really bad. He had his second eye exam on friday. His eyes are still not mature enough to determine if he has the condition they are looking for that causes blindness in premature babies. So we have to go back again in two weeks. I expressed my concenrs about Bennett's lack of fixing on faces. He said it is Delayed Visual Maturation that often resolves itself over time. He believes it should improve within the next two months.
So-no rest for the weary. I understand that some of these issues are just the joys of having three kids. I know there will be triple the appointments, triple the work but Bennett's prematurity and Nathan's issues do make things very stressful. Looking back, Libby was a breeze as a baby, even with the projectile vomiting and not going back to sleep after nighttime feedings! Speaking of Libby, she has been feigning illness alot lately which is presumably because of her brothers' ailments and doctor appointments. She probably assumes that is the way to get some attention around here. We have been trying to give her some extra loving and snuggling to see if this helps.