Not Well At All

This morning, Peyton seems to be a little worse.  When I woke up, she was covered in multiple blankets.  Her temp was apparently low overnight (low 96's).  She's been wearing bipap continuously the last couple days.  She was going to be going down to xray, so she was switched to a nasal canula for transport.  When I took her mask off, we noticed her face was very puffy.  She's also pretty lethargic today and her mouth is pretty dry.

We went down to xray, which turned out to be a non-event.  Whatever was ordered was apparently called off for now, so after getting her all situated on the xray table, with oxygen tank and hooked up to the monitors, we had to get her back into her crib with all of that stuff to head back up to her room.

The doctors were by this morning.  While they were out in the hall, I had to suction Peyton.  What I got out was unreal.  Her secretions are SO thick they are almost solid.  There are mass quantities.  They are also darker yellow now.

She is not as well today as she was yesterday.  We don't know what is going on.  I am trying to be strong, but this is unreal.  I don't blame the doctors for not knowing what's going on with her.  They are doing all they can with what they know.  She's on 3 antibiotics.  She' s on IV fluids.  I don't know that there is more that can be done but I just wish we knew what we were dealing with!

Dermatology is supposed to come by to look at the rash on her hand.  Cardiology is now being consulted because of the edema (face/feet).  Infectious Disease is still weighing in.  GI is on board because of the bleeding from the j tube.  She's on the Peds service, although the PICU docs were there for her last week and they are aware of her being in the stepdown, not to mention that they were there for her endoscopy yesterday.  Ortho consulted regarding her dislocated shoulders.  Neurology has been involved as has Neurosurgery.  And Pulmonary is also involved.  That's 10 specialties in case you didn't take the time to count.  11 if you count the Dietician.

So, I would say that they are covering all their bases.  I wouldn't concern yourself with thinking that they aren't doing everything they can at this point!  :)

As always, I will keep you updated.

Still Appealing

We hope everyone had a wonderful Easter!

Peyton is doing well. She did see her regular Ophthalmologist last Thursday and was given a good report. I asked about her eyelid pulling away from the eye as the other doctor had mentioned. She said that she really didn't see a problem, so nothing to worry about there apparently. She's happy with where Peyton's vision is right now, so doesn't need to see her for 4 months!! This will be the longest time between visits!

Peyton followed up with her Neurosurgeon on Tuesday. He wants her to have another MRI to make sure nothing has changed. That will be in June.

Therapy continues to go well for Peyton. We're approaching crisis mode, however. The company is having issues with my insurance company (for all clients with that insurance). They are gearing up for another round of denied claims, like what we experienced between October and December 2007. To that end, they are unable to provide services under our plan and if we want to continue past the 25th visit, we must private pay. So, that's about $800-$1,000 a month I don't have. Now, it's possible that the insurance will pay, but in order to prevent being out all that money for their clients, they want the private pay rate to cover the sessions in case the insurance company does start denying. Seems to me they are about to lose a lot of clients!

I'm still in the fight of my life with insurance as I am filing my second appeal to have those 13 denied claims reversed and paid. I do not feel optimistic at all. I'm mailing the package out today. I think they have 30 days to notify me of their decision. So please be sending up some prayers that this stress and burden will lifted and that the insurance company has a conscience and does the right thing.

Will keep you informed of our progress.

Surgery Follow Ups & New Therapists

Peyton had her 1 month follow up with her Neurosurgeon this afternoon. I am very happy to report she is doing well. Unless something else comes up, she doesn't have to see him for another 6 months. At that time, he will decide if another MRI study is necessary.

She will see her ENT for her 1 month follow up for her ear tubes/adenoid surgery on Thursday.

Peyton's new physical and occupational therapy is going really well, although she's missing some this week due to all her other doctor appointments. Still, she's getting more than she was. We're wearing her out with all this therapy now!

Will keep you updated on her upcoming appointments.

Neurosurgery Follow Up

Peyton had a good report from the Neurosurgeon yesterday. She is doing very well and the doctor is quite pleased. He removed the last remaining steri strip. The incision area is quite red but he said that is from the sutures which are under the skin and should get better shortly. If not, we'll go back to him. He ordered an x-ray to make sure that her neck is remaining stable when extended or flexed. It is. So, we ended on a good note and will return to see him in a month.

Next up...Friday's ear tube/adenoid surgery. Still a go. I am most anxious to have all of this behind us!

Post Surgery and Upcoming Surgery

Just a quick update to say that Peyton is doing really well since her surgery on August 9th. She has been just as mobile as ever since she came home on the 11th. She scared me at times with how mobile she was! I would have thought her neck would have been very sore and she would choose not to move it so much. Not the case! Actually, her doctor said that it's better for her to be mobile because it will heal faster.

In addition to the oxygen levels remaining at a really good level while she's sleeping, we've noticed a change in Peyton's feet. Since she was born, her feet have always been freezing. Now they're a normal temperature most of the time!

If all goes according to plan, Peyton will have her ear tube/adenoid surgery this Friday, the 24th. Her congestion from being intubated on the 9th has finally eased up and I think she's good to go for Friday. One more surgery coming up in September. This one is to shorten the tube of one of the shunts in her eyes. We found out that would have to be done back on 7/30/07, but the doctor didn't want to do it at that time since she had so much bacteria in her eyes at the time. It's apparently a very quick and simple procedure. It will be so good to get these surgeries out of the way.

Mom will be arriving on the 29th. Moira's looking forward to seeing Granny. I think she thinks Granny just lives at the airport and we just pick her up and drop her off as needed. On the 30th, Ron and I are off to Las Vegas until the 4th for some much needed R&R. It'll be the first time I've been away from Peyton since I was hospitalized in May 2006. I'm not feeling 100% great about leaving the kids, but I know they will be in good hands!

Will keep you posted on how Peyton makes out at her follow up with her Neurosurgeon tomorrow as well as her surgery on Friday.

Home!

Peyton came home today! We were home by about 11:00 or so this morning. She is doing really well after her surgery. She occasionally will get fairly fussy which leads me to believe she's still in some pain. I can't imagine her not having some pain! She is becoming more and more active, which is good. The doctors told us to just let Peyton be herself and not restrict her movement too much. We were told that if she can get moving her neck as she normally does, it will help her out in the long run.

She is still pretty congested, so hopefully we can get that knocked out pretty quickly. It makes me a bit nervous considering her hospitalization for her congestion back in May. However, I am sure they wouldn't let us leave today if she wasn't well.

Peyton's not 100% her happy little self, but she's getting there. She's definitely quite active now and is making us nervous with her head movements, but we realize it's good for her to move. We get to take the dressing off her incision tomorrow. How fun. She just has steri-strips holding the incision together. We will follow up with the Neurosurgeon next week.

Going Home!

Oh Happy Day! I just spoke with Sarah and she shared the wonderful news that Miss Peyton was seen by the neurosurgeon's resident and he has given his approval for her to go home at some point today!!

Peyton had a fairly decent night. She is still quite congested and is getting suction treatments. Two different pediatricians have been keeping tabs on Peyton because of this problem. She was given Benadryl to ease the congestion, which they feel is a normal after affect of the surgery. She is being moved around more today - being held upright in order to ward of pneumonia.

During the night and early this morning, she had some fussy periods because of the pain. I believe she got Tylenol to ease that pain.

Peyton's blood oxygen levels continue to be very good. After surgery, they were between 97 - 100%; Thursday night they were 89% and higher while she was having her breathing problems; yesterday, with her congestion, they were between 92 - 95%. This has totally baffled the neurosurgeon who thought the surgery "might help the apnea a bit". So far, she has not required her oxygen.

Once Peyton is home, she will have to be watched carefully. She has to be very careful regarding neck extensions, etc.

Hopefully the whole family can now get some rest and enjoy being home together again. Way to go Peyton! We continue to cover you in prayer and thank all of your prayer warriors.

Granny

Post-Surgery Update

After a very interrupted night, Peyton seems to be faring a bit better this morning. Yesterday, her breathing sounded very raspy and she was quite hoarse (stridor). When she was breathing, her chest was being sucked in. Last evening, when the neurosurgeon saw her, he was concerned about her breathing. Before long, there was a flurry of activity to determine the cause. Her BP was elevated a little too. After much poking, prodding and a chest x-ray, it was decided that the problem was caused by inflammation of the vocal chords as a result of being intubated during surgery. She is being given steroids by IV every six hours to reduce the swelling. After her first treatment, there was an improvement. This morning, her hoarseness has diminished, but she still has a lot of congestion in her throat.

Peyton is managing to take her bottle today, which is a good sign. When I spoke with Sarah, she was holding Peyton and I could hear that she sounded a little better. Although pretty tired, Sarah is quite pleased that things are a little easier for Peyton today.

Once again, thank you all for your prayerful support.

Granny

C1 Laminectomy

Sarah has asked me to update the site for her. Peyton came through her surgery very well. When I spoke to Ron an hour or so ago, she had been moved into phase two of recovery. Right now, they are waiting for her to be moved into her own room. The doctor was pleased with the surgery. Peyton was in some pain, so she has received medication for that. She is still pretty sleepy and has only stirred a few times. She isn't too interested in taking in any fluids - just a couple of drops. Since the discovery of her sleep apnea, she has been using oxygen while asleep. When Ron and Sarah went into the recovery area, Peyton was asleep without oxygen. She is in quite a deep sleep and her blood oxygen saturation was about 98% ~ so, she is able to breathe on her own at present. I'll leave it to Sarah to add in all of the details, which she will be most anxious to do and will do better than I can.

Thank you all for your love, support, concern and prayers.

Granny

Surgery

What a day. We went to see Peyton's Neurosurgeon for a follow up to the MRI she had last week. Back in November, her MRI of her brain showed something at the base of her skull/top of spinal column that they wanted to keep an eye on. Unfortunately the MRI cut off right at about this point. The problem was a new one so they weren’t expecting to need to see further down her spine. Last week’s MRI went further so they could get a look. The tightening that they noticed at the top of the spine has gotten worse and requires surgery. It’s one of those things that could be done now or could wait a bit, but then if you waited…what if something happened?? The big concern (one of the concerns) is that the sleep apnea she has is very likely caused by this problem and could get worse. The area of the brain above this problem area controls respiration. We didn’t delve into the “what ifs”, but decided that urgent surgery is the order of the day. She is scheduled for Thursday. We have to be at Texas Childrens for 6am on Thursday. He said the procedure is fairly simple.  Ok, I’m not the neurosurgeon, so perhaps that it is not actual “brain surgery” maybe makes it “simple”! It’s about a 30 minute procedure – decompression is what he called it. She’ll be in the hospital 2-3 days. They have to keep a close eye on her because of risk of infection, her apnea and generally because of her other issues.

So now we wait anxiously for Thursday to be over and done with. I will keep everyone posted as soon as I can once she is out of surgery. We appreciate your prayers!

Daycare Dilemma

What a whirlwind the past week has been. My mom and dad came down for a short visit for Peyton's birthday party. It was great seeing them. I just wish it had been for longer!

Peyton's birthday party was very nice. We had ourselves plus 11 others who came. It was a Baby Einstein theme. Thank you to those who were able to attend!

Last Thursday, Peyton went to her pediatrician for her 1 year check up. The doctor said she seemed a million times better than she was while she was sick. She spent a lot of time discussing a lot of issues with me. She is the greatest doctor. You never ever feel rushed. She always takes as much time as you need with her. She also makes you feel like you and your family mean a great deal to her.

One of the items which we discussed was the fact that we ought to be looking into a child care situation for Peyton which handles children with disabilities. She was thinking by the time Peyton was 18-24 months would be appropriate. She recommended a place. There aren't too many like it, so it's not necessarily as convenient as where the girls currently are, but if this is the place Peyton needs to be, then we'd just make it work.

Part of what prompted this recommendation is that our daycare, which both girls attend, has stated that Peyton is scheduled to move up to the 1 year old room on July 15. We had always said to them that we didn't know if that would give her enough time to be ready to be moved up. About a month ago, it was mentioned to me and I asked what we would do if she wasn't ready. The response was basically to put the answer off by saying we'd cross that bridge when we got to it. Last Thursday, she mentioned the same to Ron when he dropped Moira off. He raised the same concerns and was basically told that they were moving her July 15 as they have already given her spot in the infant room to another family who already has another child in one of the older classes. Long story short, what was discussed really made us angry and sad, really, which is why I brought the situation up to the pediatrician.

Last Friday, since my parents were going to watch the kids, I called the daycare to let them know they would not be there. That was all I wanted to discuss. I was still upset about the previous day. However, I was cornered into a discussion about the same thing. It went on for at least 30 minutes. The owner said she guessed we needed to have a conference in person. I cried for about 2 hours after this conversation because it was so hurtful, upsetting, and stressful for me. The bottom line is they have a business to run and, although they claim to be acting in all the families best interests, it appears to me that they are choosing to bump us in favor of a family who causes much less inconvenience to them. Discrimination, anyone?? This prompted a phone call on my part to the State and the local Child Care Licensing Agency to find out if what they are trying to do is legal or even appropriate.

The regulations on child care for a child with special needs are basically that they need to meet minimum standards of care and that the child must be fully integrated in the class. All activities must include all children, whether they adapt the activities so she can participate or adapt the other children to something that Peyton is able to do. The "gray area" is that while they are required to meet minimum standards, they may choose to use the developmental or emotional age of a child upon a doctors recommendation in determining the child's placement in the facility. They recommended that I get a letter (which I was already in the process of doing), have the conference, and if we were not satisfied with the outcome, we could call back and file a complaint. At this point, they would send out an investigator to determine whether or not the minimum standards of care are being met for Peyton. After this call, I began writing a list outlining my discussions with the daycare regarding every one of our concerns. The list is 7 pages typed.

Ron called on Friday to set up a conference but apparently whoever he spoke to couldn't set it up. He did not have a chance to do it yesterday. He is concerned about me and my stress level, so he wants to handle the conference himself, discuss it with me, and go from there. That said, yesterday when I picked the girls up after work I was cornered again by the owner. I'm thinking, if you want a conference, have your conference and until then, leave me alone! I was in no mood for the conversation, so whatever I wound up saying to her, she had it coming! She has been a tad condescending and has said we obviously don't know what is in the 1 year old room and we don't know what's available. And she doesn't get how the doctor can possibly determine the 1 year old is inappropriate considering she's never seen it. And I can say obviously after all this time, the daycare hasn't got a clue what they're dealing with as far as Peyton goes. She showed me the 1 year old room. She had stated when they go outside, we could leave a stroller there for Peyton to sit in and be moved around in while the kids are playing. That's fine - if she could actually sit in a stroller! She actually went online to find infant strollers. She printed the list out to show me the pictures. They were all forms of umbrella strollers. Some were quite nice and I'd like to have some of them, but the bottom line is it isn't appropriate for her. Bottom line, we cannot put Peyton in a situation which is inappropriate. The daycare seems to be refusing to keep her in the infant room because they've promised it to someone on the waiting list. I thought a waiting list was just that - a place to wait til a spot opens. Not a place where you tell people they definitely have a spot come July 15.

Anyway, the discussion went badly last night. We were very upset. The bottom line is that we are now in an urgent search for child care. And who knows what we can get. The special school for Peyton may or may not have a spot for her come the start of their school year in August. They also cost for one person more than what we currently pay for the two girls combined. The daycare threw in comments about Moira which were completely inappropriate. I don't want to leave Moira there when Peyton is taken out. If they are going to treat us this way over Peyton's situation, they don't deserve any of our business. I absolutely hate creating more upheaval in Moira's life. But I can't leave her there.

Question - Does anyone in the Houston area know anything about nanny agencies or anything that might help us out??

So, this past weekend, Peyton also had her sleep study. It was supposed to be on Sept. 6, but the pediatrician was quite anxious to move it forward based on her oxygen levels while she was sleeping when she was in the hospital a few weeks ago. She spoke to the director of the sleep center and they got us in this past Saturday. Mom came with me and Peyton. I think it was more like a sleep deprivation study. It was torture for Peyton. Poor baby. She did bravely, but it was not a fun experience.

The pediatrician called me last night. She got the results of the study. Peyton is desaturating 30+ times an hour while she is sleeping. Her breathing either becomes very shallow or she stops breathing. It's central and obstructive sleep apnea. The central part means her brain is forgetting to breath. This accounts for most of the problem. The obstructive part means something is blocking her airway - enlarged tonsils, adenoids, or perhaps a structural defect with her airway. They gave her oxygen during the sleep study and this help greatly. So, last night they got us set up with oxygen for use at night while she is sleeping. The doctor will have the final report on the study by the end of the week and will determine if she needs oxygen during the day during naps.

So now we have a new problem. Oxygen. I said to the doctor I could hardly wait to tell the day care. She said lets not go there just yet. For sure wait til the final report is in. However, if she has to have oxygen during daytime naps, we now have no child care for Peyton. I can guarantee they will not be accommodating as far as this goes. So again, does anyone local know of anything that would help us find appropriate care for her????

We need to make an appointment with her Ear, Nose & Throat doctor to see about the obstructive part of the problem. The pediatrician spoke with her neurosurgeon (the 2nd one we saw for the 2nd opinion a month or so ago). They are concerned there could be a neurological component to this. She has a Dandy-Walker cyst - it may or may not have something to do with the problem. They're going to look into it. She also wants to determine if something should be done to surgically aid the problem.

At this moment, I have no idea how we are getting through all of this. I can't believe the events that have unfolded - especially with the day care. I don't even have a clue what we're supposed to do. The medical stuff is easy. We just do what they tell us to do to help Peyton. I don't care if we have all the appointments we have to keep Peyton's life progressing in the best possible way. I DO care that my child is the subject of what appears to be discrimination and that she appears to be an inconvenience to the people who have provided her care for nearly a year. I've toughened up a little more the past week or so. I am not afraid of them. I am NOT afraid. I WILL report them to the licensing agency when this is all said and done. I'll throw in that they never keep her hearing aids in as well. That'll be nice. All I know is that Ron and I are Peyton's best advocates. What happens to her is OUR decision, not the day care's. If we don't stand up for her, no one else will in this situation. We'll do what is best for her. And we have a pretty good team of people who stand behind us on our side of the issue, so I don't feel so alone in all of this.

Sorry for the length of this post. Believe me when I say it IS the short version!! If you can say some prayers about all of this stuff that everything works out ok, that would be much appreciated!! Thanks.

Neurology and Second Opinions

I took Peyton to see her Neurologist yesterday. It was a rather uneventful visit. It was nearly an hour each way to get there and back. I had to wait in the waiting room for nearly an hour before getting in. The doctor actually comes to the waiting room himself to get you when he's ready, so when you go back into an exam room, you don't have to wait for him. That is, except for when he spends ages reviewing Peyton's file, realizes something is amiss and gets up, leaves the room, corrects a letter he sent to Peyton's Pediatrician, comes back, reviews the file some more, realizes another typo on the same letter, goes back......you get the idea. It was a long visit. It was a 3:00 appointment. I left the house at 2:00 pm and was home at 6:00 pm. Fun!

In terms of how Peyton's progress is going. Well, that too is a bit of a mystery. You have to understand this doctor is probably an absolute genius. He tends to think out loud sometimes. Except for this time. I think he thought a lot in his head, reviewed his notes, raised his head to ask me a question or to, thought some more....and that was pretty much it. He didn't comment a whole lot. He did say he wanted to order an MRI. I brought up the second opinion we had with the Neurosurgeon earlier in the week and how that doctor has already ordered and scheduled one. We briefly discussed this doctor visit and the upcoming MRI.

He is just stumped, really. It was an odd visit. I guess no news is good news in this case?? I know he is concerned about Peyton judging by the number of research articles he has in her file. I think he must always be thinking about her case and wondering what this could possibly be in terms of a general diagnosis. I guess he just didn't have much to say.

Peyton's rolling over now pretty well. She scoots a bit on her back - not too far - by digging in her heels to the floor. She's trying a little here and there to raise herself with her arms when she's on her tummy. It's a very difficult process for her as she has little strength in her arms right now.

We finally got properly fitting ear molds for Peyton's hearing aids in the mail yesterday. We were so grateful to have these so she can be wearing both aids all the time. The right was was so ill-fitting that it screeched all the time and it was very irritating to one and all, and probably to Peyton as well. So, now that they fit and are no longer screeching, Peyton has discovered she can grab her hearing aids, pull and yank them out. Once she's accomplished that, she thinks it's kind of fun to try to eat them. Not sure how to break that habit!! That could turn into an awfully expensive snack!!

Our Zoo trip is in the morning tomorrow. I wonder how that will go. I wonder if it will go. It's supposed to be kind of stormy overnight in some areas and possibly rain in the morning. I hope not. We were really looking forward to it. Maybe it will be clear over by the Zoo. Keep your fingers crossed!!

Have a wonderful weekend!

Second Opinions

Ron and I took Peyton for a second opinion from a Neurosurgeon with Texas Children's Hospital today. She had previously seen a Neurosurgeon with Children's Memorial Hermann Hospital on three separate occasions. She saw him in the hospital after she was born and we followed up with him after a couple months just for a consultation. She saw him a second time when her Neurologist had concerns about the possibility of the bones of her skull fusing prematurely. She saw him the third time after she had her 11/30/06 MRI and CT Scan which showed a disturbing unexpected finding - there is a tightening at the cranial-cervical junction with decreased flow of cerebral spinal fluid. On each visit, the Neurosurgeon stated she didn't require surgery and probably would never but he was happy to be used for consultations as needed.

The 11/30/06 findings were disturbing enough to Peyton's pediatrician for her to recommend that we get a second opinion from a Neurosurgeon at Texas Childrens Hospital. While the first doctor tends to be more conservative, this one is apparently more aggressive.

I was quite worried going in to this appointment, fearing that she would have to have surgery after all. Fortunately, that is not the case. That said, the doctor is not without his concerns. He is concerned about the stability of her neck. He sent us for x-rays on her neck in normal position, tilted back, and chin tucked to her chest. If everything seems stable, we'll watch it to make sure it stays stable. If it is not, then that will require something to be done. However, the surgery to fuse the bones could not be done in her case because she is too young. The bones are just cartiledge right now and would not fuse. She'd have to be fitted with some sort of brace. Hopefully it doesn't get to that point. The Neurosurgeon ordered another MRI to be done at Texas Children's Hospital in 4-6 weeks. He'd like to see how Peyton brain development is progressing (or not progressing).

In other news...Peyton is going to have a sleep study done. I'm waiting for the call to set up that appointment. In the past couple weeks, we've been noticing that when she is sleeping, she will take a few really deep breaths and then just not breathe for several seconds. Then she repeats that pattern. She doesn't do it the whole time she is asleep or even every time she falls asleep, but it's a new thing we've noticed. I called her Pediatrician and she said it can be normal for babies her age to pause for up to 10 seconds, but with Peyton, you just can't be sure that that is what it is. She wants to be sure it isn't the progression of some neurological problem, so she has ordered a sleep study. I'm not sure at all when that will take place.

We've been invited to the Zoo this Saturday. Peyton's hearing teacher mentioned that the itinerant teachers (hearing and vision) are having a family day at the Zoo for their kids. It sounded like a good opportunity to maybe meet some people who at least know what it's like to have a child with hearing and/or vision problems. I'm sure no one there will be in Peyton's specific situation, but it'll be nice to finally meet some people here who know what it's like to have a special needs child.

As always, life is an adventure and we're just never quite sure where it's going to lead us!! We hope you are all well and that you had a wonderful Easter.

"Doctor" Day

We seemed to be doing so well for a while. I guess we got used to that too quickly! Today is "doctor" day. Peyton had a check up with her opthalmologist. A couple weeks back, she saw this doctor. The doctor couldn't get a great look inside the left eye because of the recent surgery to put the shunt in. She decided to give it a couple weeks, have us come back and see if things improved. That was what today's appointment was about. The good news is that Peyton's right eye is looking great and the doctor expects to get good vision out of that eye, with a fairly substantial prescription. Unfortunately, one month post-surgery, Peyton's left eye would not cooperate. The doctor couldn't get a look inside the eye at all. The cornea is cloudy - an indication of increased pressure due to the glaucoma. Since there's a shunt in place, this should not be happening. She immediately got on the phone to the glaucoma specialist and sent us right over there. He looked at her eye and went ahead and scheduled an eye exam under general anesthetic with possible surgery for this coming Monday. It may be that all he needs to do is remove a suture but we'll see what he finds.

So, here we go with another general anesthetic (Peyton's 11th) and possible surgery (would be her 10th). The regular opthalmologist was rather grim this morning. She is deeply concerned with the left eye. The biggest concern is that if this glaucoma problem cannot be resolved as quickly as possible, Peyton could very well lose vision in her left eye permanently. News like that is never good to hear. We already have to much to deal with with her having moderately severe hearing loss. We have known all along that she also has great vision issues, but have always hoped that with a lot of correction she should do well enough. I can't imagine how much more challenging it would be if she winds up blind in one or both eyes.

We are off to the pediatrician this afternoon for some follow up lab work. Hopefully we come away with good news.

Still waiting on the results of the genetics testing done on 1/8/07. I'm getting anxious!

We have an appointment with a 2nd neurosurgeon in April to discuss the tightening at the junction of the spine/skull. The first didn't want to do surgery, which is fantastic, but it's an awfully serious thing to NOT get a second opinion on.

Moira's taking everything in stride. I told her I was taking Peyton to the doctor and she asked if Peyton was sick. I said no, it was just a check up. She asked if Peyton's eyes hurt. I said yes. Then she declared she wanted cake. This was at 6:45 this morning. She's been declaring that desire for days as, for some reason, she thinks every day should be her birthday!! Just over a month to go and then she can have her cake.

Will keep you all posted on how Peyton makes out on Monday. Thank you all once again for all the support you have given us. We are grateful for it and are mindful of all of your support every single day.

Neurosurgery Update

Peyton went to the neurosurgeon this morning. We are so happy to report that she does NOT require any form of surgery!! Thank God! The doctor felt that he could probably fade into the background in terms of Peyton's care because he really didn't see the need for any type of surgery at all. He was happy to consult though. He said we are to watch her development as we have been doing and if she ever starts to not do things that she once was doing or was trying to do, then that should raise a red flag and we'd have to figure out what was going on.

After that appointment, we went downstairs one floor to her opthalmologist for a check up. She had great reflexes in her right eye and none in her left. That was not unexpected since she just had surgery on her left eye on the 8th. We are to follow up in 3 weeks.

We're in between appointments now. Her nutritionist comes in an hour. Peyton was supposed to weigh 13.5 lbs by the 15th of this month and we had her at about 14.75 or so about a week ago. As of a couple days ago, we think she's probably pushing 16 lbs. She was to weigh 15.5 lbs by Feb. 15th, so if she's 16 lbs now, we're doing great! I'll keep you posted.

Thank you everyone who has taken the time to send messages to us or sign the guestbook on this website. Your support, as always, is much appreciated.