She is 100% back to normal now (better than before, actually, but I’ll get to that in a minute). She did have “night terrors) for about a month post-op. She would wake up in the middle of the night, several times per night, crying and wanting to be held. Pretty normal I think for everything that she has gone through…but even that has stopped now and she sleeps though the night again.

Since the surgery Lennon has stopped having refulx issues. She used to spit up or throw up after almost every meal. It was improving some with age, but right up until the surgery she was on medications for it (never helped even a little bit) and we had to thicken her milk with rice cereal (that did help some). Post op we decided to wait to add those things back in to see if she really needed them…and she didn’t! NO more throwing up and no more Sandifers - type episodes.

Lennon also used to wake up in the middle of the night screaming, crying and hitting herself in the head. She would usually continue this behavior until she was given Tylenol and only then would she go back to sleep for the night. This has also stopped..

Lennon has started learning in leaps and bounds (her development had sort of stalled out right before the surgery). She is keeping pace with her twin sister now, and even passing her up in some areas.

All of the swelling has gone and now you can see the disolveable screws that they used to secure her skull through the skin. She also has some bruising around her incision and her eyes. This makes her look “tired” all the time, even when she isn’t, and the doctor said that this could take up to a year to fade completely.

Overall, I am simply amazed.

I am 100% glad we did the surgery and am terrified to think of what the repercussions might have been if we had not. It was a very difficult decision to make because there is just so little information out there on such a rare condition, but the difference I see in her is huge and she seems so much more comfortable now, I can hardly believe it.

There is one other piece of information I wanted to put out there because I am hoping that other parents in the same situation might be saved from making the same mistake we did.

As you know, in addition to having craniosynostosis, Lennon also had something called positional plagiocephaly. This is a much more common condition in which part of the skull is deformed due to outside pressures (rather than a premature suture closure as with the cranio). This is treated with helmet therapy to remold the skull.

After a long fight with an inept doctor who insisted that Lennon did not have craniosynostosis (WRONG!) and that her plagio was too mild to require a helmet (also WRONG!) we finally had Lennon fitted for a remolding helmet around June and she wore it for about a month. The normal course of treatment is a minimum of two months. Luckily Lennon’s plagio was corrected quickly because we were forced to discontinue treatment early.

I have not mentioned this much because I did not want to upset friends and family members until I knew for sure  going on; but towards the end of the second month in the helmet (following a growth spurt) Lennon’s development started to backslide (she could no longer stand, would not longer say “mamma” or “dadda”, etc), she was showing major symptoms of autism (refusing to make eye contact, screaming when touched, etc), and she appeared to be having small seizures. We took her to her pediatrician who was extremely concerned and who referred her to a neurologist and a developmental specialist to begin early intervention for suspected autism.

Her father and I were hysterical.

On a hunch, we took her out of the helemt..even though it never seemed to bother her…and her symptoms improved some! Post op they are 100% gone.

As it turns out, helmet therapy may not be safe for children with cranio. One of the problems with craniosynostosis is that it causes elevated pressures in the brain because the skull cannot expand with growth. The remolding helmet works in a similar way (restricting growth in particular areas to round out the skull) and when children have BOTH conditions it can cause a sever rise in intracranial pressure. Again, because it is a rare condition there is no research on this particular set of circumstances. However, this was the opinion we were given by one expert (Dr. Fearon, link to the left) and it makes sense in our situation. I am unclear as to whether or not helmet therapy would be safe AFTER surgery to correct cranio or not…but that is the path I would have chosen had I known.

She is still lagging behind Evy in milestones, but hopefully now that she feels better she will start to catch up. The main indicator that she *is* feeling better post op is her eating. Lennon hasn’t been good with the bottle since she was a few months old…Before the surgery she would only take about 3 oz per feeding and that was AFTER fighting with her about it. Now she cries for her bottle and then will take up to 7 oz! Woohoo!

Here are some new pics:

The last one is Evy, of course. Cause she’s a cutie too! =)

*There are two old pics mixed in for comparison*

These are from two nights ago (so 5 days post op). We are 7 days post op today, but things don’t look much different yet. I will try to post newer pics this evening. Everyone please keep your fingers crossed that that other eye opens up soon, I’m starting to worry!

But, the important thing is that she is doing better now. She is eating (still mostly Cheerios and Apple Juice, but we have to remember that she is a KID and if she wants to survive on those for now I’m fine with that, as long as she is happy ::grin::). Shes doesn’t seem to be having too much pain and is playing well, she really missed her toys and her sister while she was gone!

The incision is healing really well thus far. It looks really big and scary on such a cute little girl, but it will be hidden in her hair in no time. The swelling continues to go down and she really looks fantastic! I was very worried about her looking different after surgery and/or not being happy with the results, but she really looks awesome! She was beautiful before, and now she is just amazing!

Also, as I mentioned, her development is also picking up some already! She has pulled herself into a standing position several times since the surgery (something that she had only done maybe twice pre op).

She does seem to have quite a bit of post traumatic stress going on, which isn’t surprising really, though it’s hard for mommy and daddy who wish they could protect her from everything big and bad and scary in this world. She is having a hard time eating because she is nervous about anything being brought to her face (spoon, bottle, even mommy and daddy’s hands), and she must have her blankie with her at all times. She is also very clingy and cuddly. All of these are things that she will work through as the days pass and she realizes that she is home and that she is safe.

All and all things are finally looking up and we are so glad to finally be able to put this whole mess behind us and focus on the girls upcoming birthday and new baby brother!

Yay for Lennon, our little rock star! (I’ll be posting new pictures this evening, so check back later on.)

In the early morning on Saturday while still in the hospital in Los Angeles they gave Lennon a blood transfusion. Before surgery her hemoglobin level was 10 (normal is considered anything above 12, I am not too clear on why they considered/still consider 10 to be acceptable for Lennon). After surgery it was 8 and by Saturday morning it was at 6. About 3 hours after the transfusion they checked her again and it was up to 9. They decided to send her home.

At this point she was not eating well, but it was improving steadily so I felt comfortable with that. I did notice that she felt very warm, but each time the nurses would take her temperature (under the arm pit) they were normal. At this point she still had not had a bowel movement either.

When Daddy and I got her back home to the medical housing that evening we decided to buy a rectal thermometer at a drug store along with the other things we were stocking up on (pedilite, laxatives, diapers, etc).

When we checked her at home it was some where around 103, if I remember correctly…so we packed her back up and headed to the ER. When we got there her temp was normal (rectally). They did a urine culture (normal). So we figured we were crazy paranoid first time parents and brought her home to Riverside.

She did “alright” the first day but by Sunday evening we knew something was just off. She would sleep all the time unless woken up by us – she never cried to be held, fed, etc…and she was refusing almost all attempts at feeding her. By this time we had also noticed a strange hand tremor that we had never seen her have before. Oh, and another strange symptom since the surgery is that she has been rubbing her nose like mad! And no. She does not have a cough, runny nose or stuffiness.

We had a post op with her regular pediatrician the next day at 1. When we took her in for that appointment the doctor ordered IV fluids for Lennon in office but when she couldn’t get a vein it was decided that something was just not quite right and she sent Lennon to the big Kaiser hospital in Fontana to be admitted.

When we arrived she had a fever of 102 (rectally), BTW. They finally were able to get an IV started and have run a million tests thus far. She has had x rays of her chest, abdomen and bowels (all clear). Blood cultures (still pending) and tons of blood tests. The tests revealed that she was not as dehydrated as we had thought (she was a little, but not terribly) and that her hemoglobin is back down to 8.

Yesterday Lennon’s condition remained exactly the same with the fevers and refusing to eat (she also vomited once). Today she finally had a bowel movement (via suppository), she has eaten (only Cherrios), and is taking much more fluid orally. She is also up and playing some – though she still spends most of her time sleeping. And this evening was the first time she has not had a fever when it was time to administer medication.

Long story short: We are all completely stumped. She does not have any signs of infection (via blood tests). She was not horribly dehydrated. She does not have pneumonia, appendicitis, or a bowel obstruction.

So what DID cause all of this?!

The thing that is really concerning me are her hemoglobin levels. If they drop again by morning she will get another transfusion. The problem with that is the WHY. Why is she having trouble maintaining her red blood cell count? =/

So, once again, prayers are GREATLY appreciated!

All of you have been so wonderful, I truely believe that every prayer, well wish and happy thought has made Lennon just that much closer to being 100% again. It means more than I could ever express to know that so many people love Lennon and are rooting her on.

Right now, I guess we are hoping that her hemoglobin levels are higher in the morning and that she continues to improve and is released. The doctors only theory is that it may have been some sort of virus that threw her recovery off track.

All I know is that I am more than ready to have my baby girl home safe and sound and HEALTHY! I am sick of hospitals and needle pokes and I *know* she is too.

Oh, one more thing, we have already noticed Lennon’s development picking up since the surgery! Her pincher grasp (grabbing Cherrios with only her thumb and forefinger rather than her whole fist) is fantastic all of a sudden and she has been pulling herself up to a standing position in her crib at the hospital (something she had only done a few times pre-op). Go Lennon go!!

Of course I am terrified out of my mind…though I really do believe that she will be fine. It is just very hard to hand your HEALTHY child over for something like this. ::sigh::

Anyhow, prayers are GREATLY appreciated.

We are leaving here in a few hours to head out to LA. We are staying in medical housing tonight and Lennon’s check in is at 5:30am. I am hoping that she will be in surgery by 8 at the latest.

Remember, I will be updating here on Twitter (to the left) from the hospital.

We have set up a Twitter account for Lennon (MsLennon101 – if you want to follow her directly). You can read her Tweets right here on the left side of this page. We will be updating via Twitter during her surgery and hospital stay.

As you know by now, Lennon’s surgery is next Thursday.

We all cannot wait for this to all be behind us! By this time next week, God willing, Lennon will be safe and sound with a perfect new forehead and no more surgeries for a good long time!

Prayers are greatly appreciated, not only for Lennon to be strong, brave and to have a speedy recovery, but also for Mom and Dad to be strong and brave as well.

* In my stupor (we got up at four this morning to get Lennon to her appointment in LA by 9am) I forgot to mention one VERY important fact. We were told today that Dr Wexler had broken his wrist and that the surgery would be performed by Dr Kawamoto (Dr Henery Kawamoto Jr, Google him) instead. Dr K was already going to be a part of Lennon’s team, but he is now going to be the lead Dr. I wasn’t sure how I felt about this at first, but after coming home and researching him I am actually quite pleased.

Not only is he one of the best in the nation (not that Dr Wexler isn’t great, I think he’s just a bit “newer”), but he was also one of the doctors who pushed more for Lennon to have the surgery than not. When we had our preop with him last week we asked him if she needed the surgery and he said yes without a moment’s hesitation. When we told him that Dr W had been on the fence about it, he sort of backed up and altered his opinion very slightly so as to not contradict another member of his team…but it’s pretty clear that he feels that she clearly needs it.

That makes me feel a TEEENY bit better.

It is difficult beyond words to have to make the decision to put your baby through something like this when you are given an “out”.

In other words, Alex and I feel that Lennon should have the surgery. Yes, she might likely be “ok”…as in she most likely won’t have any very serious repercussions if we chose not to operate. However, she MIGHT. And she will definitely always look “different”. BUT, it is so very hard to agree to put your baby through a horrible operation (and I am not going to lie, this is a major, MAJOR surgery) when you are given any other option.

Long story short, we’re glad he (with 20+ years experience) believes that Lennon truly NEEDS this operation.

::sigh::

I really wish this was all over and Lennon was safe, back at home already…all done with this nightmare.

We are seeing some improvement! She has one more month to go until her surgery and we are not sure if we will then have a second remolding helmet made at that point. It will depend on what her head shape is like after the next month in the helmet and what the doctors recommend after her procedure.

I also included a current picture of Lennon’s forehead. Some of you have asked if the helmet might improve Lennon’s head shape enough that we may be able to avoid the surgery. Unfortunately, we are treating two different cranial conditions. The plagiocephaly which is being treated with the remolding helmet is a separate issue from the metopic craniosyinostosis which can ONLY be fixed surgically. Again, we have decided on the surgery for Lennon not out of concerns about aesthetics but based on the distinct possibility of brain damage if we do not.

Lennon’s specific type of craniosynostosis in particular has been linked to lowered IQ, learning disabilities, and even autism if left untreated.

As Lennon’s surgery date approaches Daddy and Mommy are becoming more and more worried about our little girl undergoing such an operation, but also more and more concerned about the repercussions if we do not.

Please read the following links for research on autism and premature metopic suture fusion:

Link 1

Link 2

Link 3

Please start praying now, mommy is a nervous wreck.

Also, we need O+ blood (mommy cannot donate because she is pregnant). If anyone is O+ and wouldn’t mind donating to Lennon, please let us know. It would have to be done in LA.

Finally, I will be updating this site very soon with new pictures of Lennon’s head now that she had been wearing the helmet for almost a month – there is some improvement already! Yay!

We picked up Lennon’s helmet (used to treat plagiocephaly). She will have to wear it for 12 weeks (likely longer). Good thing she doesn’t mind it at all and it looks cute as can be on her!