tough day

I'm having a tough day today for no reason. Nothing in particular triggered this so I don't know why. Bennett is actually doing better. On Wednesday at the GI appt he weighed 9 pounds 5 ounces and today at home he weighed 9 pounds 13 ounces! That is quite the jump and I should be excited but for some reason today I can't shake the sadness knowing that he has the same thing Nathan has. His little legs are just pulled up so tight already.

Just a normal moment to share for a change. I overheard Libby yelling at Nathan this morning-it seems that our little Nathan told her 'no girls wearing headbands' were allowed in his room!

Success!

So far so good with the latest concoction. Bennett is eating 4 ounces plus at a feeding and he's doing it very quickly. It took us a while to figure out how much rice cereal to use with the right nipple so that it didn't come out to fast. His feedings now take about five minutes instead of the previous 45. So hopefully we are onto something!

Libby is very sick with a cold. She came home early from school on Monday with a fever. By Thursday she seemed better so we sent her to school on Friday; however, today she is worse again. I am just praying that Nathan does not get it because it has really is affecting her appetite and she is coughing alot (when Nathan coughs he throws up.) She ate one chicken nugget today for lunch. Poor Libby never ever gets sick. I feel so bad for her. Plus Nathan is his usual chatty self, talking non-stop to her and she is not in the mood to talk.

Nathan has fallen several times in the last week or so. He just trips over the smallest things or starts going to fast and once he starts to fall he has no way to stop himself. He recently banged his head on the train table and the corner of Libby's bedroom wall. Outside it's like watching a 12 month old. You're just never sure when he is going to lose it. It is so nervewracking because of how fragile he is. We've already had three official head injuries and I can't take any more. The worry with him is outrageous and that is one of the things I feel like I can't deal with again with Bennett. I also finally called Nathan's previous early intervention physical therapist to get Bennett started. It is just another step towards acceptance, one that was hard to do. Nathan has PT once a week now and we will have to do it twice a week during the summer when he is not in school. I'm not sure how I'm going to fit in PT for Bennett at home. I've also been feeling guilty about not doing Nathan's home exercises consistently. With so much going on it often gets overlooked but if we want him to improve we need to start doing it more often. For a while one parent would work with Libby on homework and one would work on PT but somewhere, somehow we got off track. His PT at school is going to give me a home program for stretching to increase his range of motion and allow him to sit cross legged.

GI

Yesterday was Bennett's GI appointment with Dr. Boyle. Mark took him because Libby was home sick. We cancelled Nathan's appt with the feeding clinic because we both wanted to be there. It is rescheduled for 4/20. Dr. Boyle said that Bennett's behaviors sound like classic reflux. He recommended an increase in the axid, adding rice cereal to his bottles, trying Allimentum formula and adding the medication lactulose to help with bowel problems.

I've been really down the past couple of days. It started with the endoscopy and has been solidified by the development of torticullous and plagiocephaly in Bennett. He really only turns his neck to the one side so his head on that back side is flat. Apparently Mark has been stretching his neck without my knowledge in an effort to rectify the situation prior to me noticing. Anyway, I find it upsetting because his little legs are already showing some serious tightness and now his neck. I just can't believe it is manifesting itself already.

Everything is just like Nathan. I hope that it doesn't set me back each time one of these things presents itself. I am just sad with the reminder that he will not be a typically developing baby and will require lots of therapy in the next couple years. Mark was surprised by emotional setback saying that he is sorry this is "beating me up so badly." I'm not sure what Mom wouldn't be "beat up" by learning that their kids are not going to be normal. He seems to have accepted it and moved on but it is a process for me.

Lately when I see something that would normally hurt so bad, I wait for the hurt and it doesn't come. Something like a fat baby or the "future football star" on Bennett's pajamas. That is when I know that everyone's prayers have been making a difference in my life. I have had more good days than bad, just a couple bad days recently.

Endoscopy

Nathan had his endoscopy today. The doctors did not find any inflamation with the endoscopy. I'm so dissappointed. I was really relying on that these last few weeks whenever I got down about Nathan's weight. We still have to wait for the results of the biopsy but I was really hoping for the doctor to come out and say, 'wow, no wonder he is not eating...............'

Anyway, the procedure went fine. They couldn't get the breathing tube in his throat because of his chin being so small. They had to put it through his nose and told me to tell all anesthesiologists in the future that he is difficult to intubate. He also said they took pictures of Nathan from below the eyes and asked if they could use them for teaching purposes. Coming out of the anesthesia he was a bit belligerent, flailing around. He kept calling for me even though I was holding him. That's all for now, just really bummed.

Smiles

Here are some smiles from Bennett. I couldn't pick one picture so I included them all. We had to employ Libby to get him to smile. He likes her voice the most and smiles easily for her. Bennett seems to like the Playtex drop in bottles a lot better. He is alot more relaxed when eating and is eating at least 3 ounces at each feeding. It is still a delicate operation with timing the dose of axid and making sure he is in the right mood to eat. It is not the miracle cure but much much better than before.

Tomorrow is Nathan's endoscopy. I'm afraid I have my hopes up too high and will be disappointed. I am hoping that the doctors will find something that is correctable and will allow him to eat more and gain weight. I am nervous about the whole procedure, especially with the anesthesia. Once during an IVF treatment I stopped breathing while under anesthesia. I always inform anesthesiologists of this regarding myself and Nathan; however they usually shrug it off as not relevant. It still makes me nervous.

reflux update

Upon a suggestion from my sister Jodi, we are trying the playtex drop in bottles-the ones with the bags so that the baby doesn't swallow any air. We only bought one due to our increasing pessimism. So far he seems to be doing better with them. We are still giving him the axid just prior to feeding him, but today he was very good for me. He drank four ounces at each feeding and seemed quite comfortable. The bottles are a pain but whatever works.

GI called and fit Bennett in on wednesday 3/25. We already have an appointment that afternoon for Nathan at the feeding clinic so it will be a busy day. Plus Monday is Nathan's endoscopy and Friday is his weekly pt at Theraplay.

That's all the news for right now. Bennett is smiling occasionally. He doesn't do it often and it is fleeting but it is so rewarding when he does. He also 'talk' alot to his toys.

just a picture

Another theory down the tubes

Mark had a new theory on Bennett's not eating. He tried giving him a little bit of his medicine just prior to each bottle. For almost 24 hours it seemed to do the trick. He ate 3 - 4 ounces with no minimal problems. The last two bottles; however, he is back to his old ways. He screams after 1 ounce and refuses to finish the rest. Friends witnessed it on Friday night when they were visiting. I feel pretty certain that Bennett solidified their plans to not have any more children. He just won't stop screaming. It is really awful. I feel so bad for him because he is hungry, but is in so much pain. Last night I was holding him and he was sound asleep. He would wake up in severe pain. I just worry that something is really wrong in his belly. And I worry that this is our window for getting him to gain weight. Nathan stopped gaining at age six months or so. The ups and downs of trying new things is exhausting. I wish we didn't have to go to GI but I certainly hope we can get there soon. This is urgent.

He won't eat!!!

So we now have two children who won't eat. Bennett drinks one ounce and then acts as if he is in excrutiating pain and refuses to drink any more. This has been going on for a while, but is getting worse. We kept thinking we had a solution. First it was zantac, then increasing zantac, then gas drops, then me giving up dairy, Axid, different bottles......the list goes on and on. Today I even had an experiment going with 6 glasses with upside down bottles to determine which nipple was the slowest. It is beyond frustrating and upsetting. He is not eating enough to put on weight. I just don't understand why it would be getting worse. I just can't believe we are going through this already again! I can't believe Bennett is not going to be a fat little baby with chubby legs. We gave up and called to schedule an appointment for him with Nathan's GI doctor. It feels like the beginning of chase we have been on with Nathan and his feeding issues. His first available appointment is May 1st. Obviously we can't wait that long so I left a message with Dr. Lockman to hopefully get us in sooner. Mark scheduled the feeding clinic for 3/25/09. I still need to contact Early Intervention but I haven't had the energy. Probably partially because I am still in denial about Bennett having the same thing as Nathan. Tonight I took Nathan with me to Libby's talent show practice. There were other 3 & 4 year olds racing around the gymnasium, jumping, running and some tackling each other. They are just so flexible and bouncy and move so easily. It is difficult to watch Nathan awkwardly moving through the gymnasium sticking close to Libby when he is supposed to be running around playing too. It's impossible not to be overprotective too as big kids race circles around him. As you know the slightest bump sends Nathan sprawling. It is almost beyond my comprehension to know that Bennett will be the same way.

Feeling Good

I am feeling better these last few days. And no, I haven't been sedated or anything (not that there is anything wrong with that). I am trying to enjoy all the regular kid things (although Nathan's behavior is sometimes making it difficult.) Today Libby is practicing her dance for the talent show after school with her friends. Being able to get outside lately helps with the depression. Nathan is riding his tricycle like a champ. We have promised him a pedal tractor when he gets potty trained-still no interest. I think Nathan and Bennett are going to be fine. They will have trials and tribulations because of their appearance and because of their limitations, but they will compensate with big personalities!

We still would appreciate prayers for feeding with both boys. Bennett seems like he is in pain when he eats and we can't get is straightened out. It is so frustrating and exhausting. Nathan's endoscopy is in two weeks and somewhere in the back of my mind I am thinking they will find something that is fixable, that will allow him to eat more and gain some weight. I'm probably setting myself up for dissappointment.

Trying to be strong

I am trying to be strong. I am trying to understand that even though I feel very sad when I see healthy little boys, that I don't have to necessarily 'go there.' I try to keep plodding along. It feels like I am in a field trying to find my way through tall grass, just pushing through, pushing the grass aside to move forward and find my way out of the field. The things that really nag at me are that Nathan did not get his first tooth until he was 14 months old and at two years old still did not have his two front teeth. He still does not have all his bottom front teeth! Also is the not rolling, crawling and walking within a normal timeline. I hate that Bennett will most likely not be able to roll around, crawl and squat down like a typical baby. The first couple years were so long with Nathan and the worry about him falling and hurting himself is overwhelming. But see, I am being negative again.

Something positive? I love having three kids. I love looking at the back seat and seeing three kids across. It is what I always wanted. I am trying every day to be happy and to force myself to go out into the big wide world. Friday I actually approached some other mothers in the neighborhood who were gathered talking. I figure I will just pretend everything is normal! If I want everyone to treat my kids like regular kids, I have to treat them that way too. I don't have to hide and be embarrassed. I need to be proud of my kids. No one is going to want to be around me if I am gloom and doom. When I see someone that makes me sad (like the very pg woman walking with her husband and their dog--ahh to be so innocent) anyway, I try to remember that their situation has nothing to do with mine. Just because other people's kids are healthy doesn't mean they are any better than me. Them having healthy kids did not prevent me from having healthy kids. It's not like there is a quota in the world for special needs kids and I was selected. I am also trying not to focus on the future. Thinking about Nathan as an adolescent, half the size of his peers makes me crazy. He isn't going to be a robust teenager with girls interested in him. He is not going to be on the football team or even the lead in the school musical. Not that I'm set on him doing those things, but so many choices have already been eliminated for him and he is 3 years old. But I digress. I am trying not to go down those roads. I wish I could make the decision to think this way and go onward and unward. Unfortunately it is a daily decision, one I have to make throughout the day every day. Some days are better than others. It feels like the life of an addict, one day at a time but it will always be present. This is my life, living with chronic pain-the emotional kind.

Nathan had some kind of stomach bug this weekend, but he seems to be much better today. Bennett is eating better. We are experimenting with formula and gas drops before each bottle while I try to give up dairy.

Here is Nathan, birth to 3 years. I look at Bennett right now and can't believe his face may change like Nathan's did. I am feeling better today I think. I am overwhelmed at the thought of doing early intervention again, but feeling okay about my kids looking different. I am thankful that Nathan has normal cognitive functioning and most of the time can just be a regular kid. I am thankful that we didn't find out at birth that Bennett has what Nathan has. That way I got to slowly realize and begin to accept the news. Had I been told at or before he was born, I would probably be in a psych ward somewhere. Nathan's endoscopy is rescheduled for 3/23/09. I am beginning to think that he has Acrogeria. He looks so much like the children with progeria, but yet his lamin A gene was normal. I found an article about Acrogeria and skeletal changes which sounds exactly like Nathan. It talks about small feet and hands, wormian bones, acroostolysis (sp?) joint problems, sclerodermoid skin changes, triangular face and pinched, bird like nose. It also describes these children with normal appearance at birth and then it slowly becoming apparent. The problem is there is very little information about the condition because it is so rare. It seems even rarer than Progeria.

On Not Getting Big

Well, our new technique for getting Nathan to eat is courtesy of Paul Allison (aka Deer Pop Pop). The last time he visited and witnessed Nathan not eating his meal, he said "I'd leave him here until he eats. Either he wins or I'd win!" Well desparate times call for desparate measures so we decided to put a reasonable amount of food on his plate and he sits until he eats everything on his plate. For the first meal on Monday, he sat at lunch for an hour and a half. It sounds cruel, but like I said, he doesn't eat. So for the first dinner that we tried it, he sat for two hours. He did get to eat his dessert, but by that time it was bedtime and he had to go right to bed without playing. So I don't know if it is working on not. Hopefully we are not creating an eating disorder, but like I said, we are desparate. I don't even know if eating more will result in weight gain. We missed the endoscopy yesterday because of the snow so we will have to reschedule.

Bennett is having some eating trouble of his own. He appears to have reflux and was on zantac, which initially worked and then stopped working. He has been on Axid since last thursday and at first we thought it was working. He didn't seem like he was in pain when he was eating and he gained several ounces weighing 8 pounds 10 ounces. Now the past 24-36 hrs he is back to struggling and spitting up. He eats an ounce and then acts like he is in pain, screaming, crying etc. It is so frustrating. Dr. Lockman wanted us to schedule with GI, Dr. Boyle but we were trying to avoid that for obvious reasons. Maybe the axid just needs more time to be effective. We really hope so.

Weight gain is still what we are praying for most with Nathan and now Bennett. We are used to struggling with Nathan but this struggle with Bennett is very frustrating and upsetting. It is just so difficult to watch Nathan not outgrow his clothing. I'm not sure why, but having to buy new clothes and shoes for your kids is a reflection of you as a parent. It brings such joy when things are too tight or short. I just don't know how I will get through that if Bennett is the same way.