A letter to my son

Cody,

Seems like yesterday when I brought you home from the hospital. I remember being so surprised by your red hair when you were born. I knew there was a chance of you being a red head but since your father and I had dark hair I never dreamed that you would have anything but brown hair. You were so tiny and so perfect. I was in awe, this little person was mine, all mine, to love and care for for many years to come!

You made being a young mom easy. You were always such a happy baby and I loved you so very much. Before I knew it you were walking and then talking and then it was off to preschool. When you were about 3 years old you got your glasses. After months of patching your eye and going from doctor to doctor we finally learned that your eyesight was bad. The first time we took you for a ride in the car with your new glasses you just stared out the window for the longest time. How nice it must have been for you to finally be able to see the world!

The years went by so quickly. I remember your toothless grin after you lost your front teeth. I remember you in your karate class and how proud I was when you achieved your new belts. I remember how sad you were when your best friends, twin boys named Justin and James moved away. I thought my heart would break. I remember your favorite thing in the world was The Power Rangers. I bet you watched their movies hundreds of times.

You did wonderful in school. You always has good report cards and the teachers spoke of what a joy you were to have in their class. Once you entered high school though things began to change. Your social life became your first priority and your grades slipped. Soon after that came smoking pot, smoking cigarettes, a car accident, drinking with friends and cutting class. Eventually you withdrew from school with the promise to earn your diploma through night school.

Today is your 18th birthday. You are no longer the sweet little red haired boy with virgin curls, you are a man. A man who needs to be responsible for himself and make positive choices in his life. We have said some harsh things to one another over the past year or two. I hope you know that my words are said out of frustration, worry and love. It makes me sad to see the road you are paving for yourself. It's going to be a hard one, one I don't want to see you travel down.

There have been many times over the past few years I have wanted to just give up on you but how can I do that, you are my son and I love you. I don't ever want to give up on you cause I know one day you will see the mistakes you are making and you will turn your life around. I pray for that day Cody cause you are smart and you are a good person and you have the potential to make so much of your life. You just have to do it.

Happy Birthday son. I will always, always love you very much.

Today Devin had his first speech therapy session. I expected him to be very shy, and he was, but not as bad as I had imagined. The first few appointments are just so he and his therapist can get to know each other and since we are going twice a week I hope he becomes less and less shy as he becomes more comfortable. She had some concerns about him having low tone in his face and asked us to introduce an electric toothbrush to him to stimulate his mouth. He has one and I had forgotten until my sister reminded me today that he kept sticking it down his diaper. lol I have no idea where he would have learned that trick from. Anyways, she suggested we practice blowing bubbles, using a horn and massaging his face, basically the same things we were told to do for Brooklyn. She also was concerned about his constant mouth breathing, though I told her that may be due to him just getting over a cold. She said she would watch him over the next few appointments and we may need to think about having his tonsils and adenoids out. Let's hope not, poor Cody had his removed when he was just a bit older than Dev and it wasn't much fun. I told her that he jargons all day long and she said she'd need to hear him first but it may be that he has trouble with phonics. I am just so glad therapy for him is underway. I want him to talk so badly! He is saying a few new things; he says "choo, choo!" when he sees a train and does many animal sounds. And he says "Sure!" He has been signing "bird" all the time too which is so cute to see. I'm really going to make an effort to learn some more signs, I know I will need to know them for B too so I just have to sit down and memorize them. His therapist suggested a show called Signing Times that kids are supposed to really enjoy. I may look on Ebay for some DVD's.

And Cody's butt is finally healing. At his appointment today the Dr. said it was looking much better and thought we'd only have to change the dressing for a few more weeks. That has become my job, oh joy, but I guess it's better than having to bring him to the doctors every afternoon. I can't believe his surgery was a month ago today and we are still having to tend to his bum. It stinks, hee hee. No seriously, it really does stink. Not his butt, but the wound. It's mean but I hold my breath as I change the gauze, it is really that bad. His Dr. is a hoot though, Cody had gone to church with a girl last Sunday (yes church!) and he was telling Dr.S about it and he laughed and said that Cody was probably praying to god that his butt healed. Was pretty darn funny at the time. lol

Some of you may be wondering how Dany is doing. Seems I don't have much to say about her since she behaves herself for the most part and isn't sick or in therapy. ;) She is doing well in school and brought home her permission slip for classes she's taking next year as a freshman. I can't believe she is going to be in high school, how on earth do the years go by so quickly? I hope she continues to do well in school, I worry since Cody's shenanigans began once he started 9th grade, I really hope she doesn't do the same. She is a social bee, always with a friend or going here or there. She and a few other kids have their own dance group and they have been practicing at the library after school so that has kept her busy and out of trouble. *knock on wood*

No word on the results of B's EEG yet. I was hoping today we would hear something but I kinda figured it wouldn't be until the middle of the week. I know they are probably busy but I'm a worried parent and I want to know what the scan showed. Guess I won't hold my breath waiting for their call, I'll save that for when I'm dealing with Cody's rump. ;)

Our appointment went well I think. I liked her much better than the Neuro we saw here in Maine.

Brooklyn had fallen asleep in my arms in the waiting room so she was asleep for much of the visit. It worked out well though because it gave us time to discuss all the issues we are having. She looked over her MRI images and explained to me that her brain has formed correctly, it's just not developing correctly. She said she does not have Microcephaly and that her head is within the normal range (30%). Her corpus callosum is too thin which we knew already. She said she does have low muscle tone (hypotonia), not so much in her arms but severely so in her legs. She said her legs are like wet noodles which of course makes it impossible for her to walk. I asked if her delays were caused by the fact that she has low muscle tone or because of her callosum disorder and she said neither; her delays are caused by her brain as a whole. Her entire brain is underdeveloped. We spoke in depth about what I believe to be seizures that she is having and she wants to do a 24 hour EEg test on her. I questioned whether or not they would need to be treated because they are so short in length that they don't seem to be affecting her much and she said if it shows that she is having them, she definitely wants to treat her for them. She said they very well can be slowing her progress and once they are treated we may see her progress much quicker then she is now which would be wonderful. I told her that for both of her EEG's she was sedated and she said they absolutely do not sedate their patients for EEG's. That was one of my big issues, how would she have a staring spell/seizure if she was sleeping? She didn't have the records from the geneticist her in Maine but wanted to see what tests had been done already, more specifically, what metabolic testing had been done. As far as what Brooklyn's future will be like, she couldn't say. She said a few milestones to work towards were, sitting unassisted by 1 1/2, pulling to stand by 2 and walking and trying to communicate by forming words by 3. She felt she was delayed by 8-10 months. She also said to be as aggressive as we could be with therapy and never ever give up hope. She examined Brooklyn after she woke up and said she was so happy that she got a chance to see her awake, that she is alert and happy and very social. She said she sounds much works than she looks and that was very nice to hear. I told her that the Neuro up here said he didn't need to ever see her again, that it was basically my call and that I could make an appointment in a year if I wanted to. She totally disagreed and said she can't believe he wouldn't want to follow up on her, which is exactly what I thought! She will be seeing her every 3-6 months and we have an appointment with her in June. She also wanted us to see a Metabolic specialist at Children's so we have another appointment on April 24th. And we are just waiting to hear when her 24 hour EEG test will be scheduled. I am so glad I followed my gut instinct and insisted we get a second opinion.

On the way into the hotel at 5:00, the day before our appointment, I get a message from the Neuro department in Boston saying that they just received a message from our insurance saying they will not cover any of our appointments at Children's. So, we will be paying out of pocket for each visit we have. Totally sucks but what can you do? I had an appointment with our case worker today and she is going to make some calls to see what she can do. B's pediatrician also said she'd do whatever needed to be done to help us out so I am going to call her as well.

Update on Cody: Well, the day he had his stitches out he fell on the ice and tore his incision back open. I had to bring him into the Drs. on Fri, Sat, Sun and Mon. so they could change the packing. We went today and the blood clot is finally dissolving, thankfully but he has a few more weeks of healing time. The Dr. insisted I look at the wound as they cleaned it out. I have seen his bum but not the actually incision and wow, I can not believe how deep it is! It is like looking down into a well is the only way to describe it. He is just miserable too and complains non stop about not being able to work, not being able to sit, not being able to see his friends. I will be as happy as him when this is over.

What a nightmare!

Poor Cody, this whole surgery has turned into a nightmare. The surgery went well and he wasn't in much pain afterwards which was good; I was worried that it would be extremely painful for him. Monday I brought him in the have his stitches removed and the weren't ready to come out yet so he wanted us to come back on Wednesday. At Wednesday's appointment he removed only the top stitch and told us that there is a gap about 2 inches long that open. He packed it with dressing because it has been bleeding continuously and had us come back on Thursday. Well at yesterday's appointment he removed the rest of the stitches and told us that there is a golf ball sized blood clot that has formed inside the area that is opened. Keep in mind, this incision is his entire butt crack. He gave Cody instructions to sit in a bath of Epson salt as often as possible and to use a heating pad when he could. He said that if the clot doesn't start to dissolve on its own he will need to have surgery again to remove it. Ugh.

So this morning he hollers to me to come bandage up his butt again. It is bleeding, and badly. He tells me that last night he fell on the ice onto his bum and it hasn't stopped bleeding since. Loooovely. So, I will be calling the Dr. this morning after therapy and I'm sure he will need to be seen. Again. I'm hoping it is the clot that is bleeding but since his stitches were just removed and he was told to skip his gymnastics class,;) I'm worried that it has torn open again. I have never ever seen such a terrible bruise either, his whole entire butt is dark purple. Poor kid, I know he is so sick of this and just wants it to heal, and so do I, I'm kind of tired of looking at his ass crack. ;)

I might as well come to grips with the fact that learning what syndrome B has may never happen, and if it does it may be years away.

We met with the geneticist and I explained to her what has happened over the last 5 months. We went over her medical records and talked about the tests she's already had done and she examined her and measured every inch of her. She said she looked like a Fez child and I have no idea what that means. I never asked, which I should have I guess. The part of her collar bone which the Neurosurgeon mentioned is a "fat pad" and she has several others that she pointed out. I'm guessing she shouldn't have them as she indicated it was just another sign of a syndrome. She said that she had a large mouth and very large teeth for her age and said both ears were malformed. I never noticed her left ear was different but after it was pointed out now I can see it. She said that her heart sounded great and that if there were problems with her organs she wouldn't be thriving and gaining weight. After looking at her eyes she said that she has a "starburst" coloring which is common in William's syndrome and that she had the appearance of a William's child but that the Microarray test we already had done would of picked up that in 99% of the cases. That test checks for deletions or missing chromosomes and that she more than likely has a "misspelling" of a chromosome and that unless you know which gene to study it's like finding a needle in a hay stack.She did say she would consider redoing the test but wasn't sure if our insurance would cover it and the test was several thousand dollars. She also knows the geneticist we see here in Maine and said she would of tested for all the same things that she did and that she feels we are in good hands. She mentioned the undiagnosed seminar in March and I told her Dr. Smith was going to bring pics of B and she said that that was what she was going to ask our permission to do. She tried to get an appointment for today with a Neurologist but none were available and said she'd be happy to see Brooklyn again in 6 months to a year to see how things were progressing. So, I guess our final trip up here will be to see the Neurologist. She said she thought we should have her MRI repeated here but I don't know if that is something the Neuro will need to ok. And would you believe when we got home at 1:00 on Wednesday there was a message from the Neuro dept wondering if we could make a 2:00 appointment! If only they had our cell number.

I feel so defeated, I really had invested so much hope into this visit. And to hear "she is what she is" once again is so damn depressing.

On a happier note, we met with her speech pathologist today and she was very happy with her progress. She is drinking well using a sippy cup with a straw and is eating any soft table food. I even gave her a few Ritz crackers and she did great with them. She is also showing much more chewing movements and is using her tongue as she should be. She is no where near feeding herself but we will keep working at it.

And Cody is oh so thrilled to be having surgery on his rump on the 7th. We have to be there at 6:00am which will just be wonderful.

What a day today has been, I am seriously ready for the kids to be in bed so I can have just a moment of quiet time before I go to bed myself. I have never in my life been so frustrated with Doctor's offices! WTF, why can't the receptionists do their jobs? Cody had an appointment this afternoon ( more on that in a minute) and just before I pull into the hospital Dale calls. He is super pissed, he just got off the phone with Dr. A's office and DHS (we have state health insurance) is refusing to pay for B's visits to Boston because they have no paperwork. Uggghhhh! To make a long story short, I sat in the office for about 45 minutes while phone calls were made to to different offices in Boston and to DHS and as it turns out they need 30 days to process the referral so they won't cover her geneticist appointment, which is tomorrow! I don't understand, how hard is it to fax over one piece of paper from one office to the next? And it's not just the office here in Maine, there is lack of communication between the offices in Boston as well. If we canceled the appointment we would still be charged for the hotel room we reserved and we'd have to wait at least 30 days for another appointment. Dale has taken time off from work and I've had to reschedule two of our regular therapy appointments to make plans to go. Why should we be the ones who have to run all the way to Portland to pick up her MRI images cause they never sent them, why should we have to go to the Drs. office to pick up the referral when her appt had been scheduled for a month, shouldn't that have been done already? Unreal. So, we are going anyways I guess and will have to pay for it out of pocket.

And poor Cody, he has Pilonidal Abscess, which in plain English is an abscess on your butt crack. He had to have it lanced today and we go back Wednesday and will need to schedule him for surgery. The surgeon said it's very deep and the "pocket" as he put it needs to be removed completely. Ouch! Poor kid was so humiliated and in so much pain he could barely walk. The Dr. said it was caused by an ingrown hair, I think he will take up shaving his ass crack after this ordeal. :P

Cody has a new girlfriend I think. He met her at the McDonald's where he works and they seem quite buddy buddy though he claims they are only friends. Yeah right. I wonder too if they are having sex. I asked him and he said "Mom, I'm 17!" like duh mom, all 17 year olds are having sex. Ugh. I may just be paranoid but I know he has spent time alone with her and she is a few years older than he is so I wouldn't be surprised. We have had enough talks about the birds and the bees, I hope he is smart enough to wear a condom.

We had our first Physical therapy session this morning. She only stayed for about an hour since B seemed to be a bit irritated towards the end of it. I asked her for some suggestions for Christmas gifts based upon where Brooklyn is developmentally and I was so, I don't even know what the word is, shocked I guess that she recommended we get her an activity mat!! I realize she is behind, but an activity mat? Geesh. She said it would help her to start reaching out for toys. I was thinking more along the lines of a musical table or a walker but I guess that is something she's not going to be ready for for awhile. Maybe I'm still in denial, it's so hard to hear things like her saying today she was at a 4-5 month level. That just breaks my heart! Anyways, we have a few different exercises that she asked us to do with her each day. Mainly we are working on sitting up and using her hands to balance herself while sitting up. The Occupational therapist will be here tomorrow and I'm interested to see what she will be doing with her.