NO MORE HELMET!

After 4 helmets and 5 trips to San Antonio, TX in 11 months, we are done!

We just got back a few hours ago from our last trip to Texas. We knew about a week before we went that Elden did not have to wear his helmet anymore. So we have been celebrating ever since. We decided to go to Texas anyway for one last visit with Darren and Dr. Jimenez. It was confirmed that he did not have to wear his helmet anymore. Elden still has a few spots on his skull that are like divets – but the doctor assured us that there is bone under there and that it is ok. We couldn’t get a straight answer as to whether or not those areas would completely grow back. Aside from a few unanswered questions, Elden really had a remarkable transformation – check out the before and after pics. Of course, for us, the shape of his head was secondary to the healthy growth of his skull and brain.

With both kids being well the whole trip (Hallelujah!) we were also able to enjoy Sea World, the Children’s Museum, the Brackenridge Park Train and the River walk.

We decided to end our day at Sea World with the last Shamu show. I didn’t think we were sitting close enough, so I insisted that we move closer – which put us at the top of the “splash zone”. “No problem”, I thought, “its hot, we are all sweating, a little spray of water would feel good!” HA HA. This was one of those moments when you know God was looking down laughing.

Both whales came to our section, turned upside down, flipped their tails and shoved tons of water on us. I mean TONS. It was like someone with 50 gallon barrels of water just came in front of us and dumped it on us. All of us were completely soaked through our clothes of stingy, salty, Shamu water. The worst thing was that the kids were on our laps and got the brunt of it. So…they were screaming, we were laughing, and we left right away! They were such good sports about it and got over it quickly. I now have periodic moments of guilt for subjecting my three year old and one year old baby to that kind of splashing, but really, I think it was a bonding experience for us all.

So that’s the end of the story for now. We will probably go back every other year or so for follow-up appointments – and that is mostly for the doctor’s to track Elden’s case. It is possible that Elden could have headaches or pressure later in life – we’ll see and pray for God to give him mercy and grace. Thanks for joining us on our journey. Thank you for your prayers and support. We give ALL the glory to God, He led us to San Antonio and helped us with our struggles throughout this past year. He has a good plan for Elden, and for all of us.

Anyone out there experiencing craniosynostosis? Email us anytime.

Back from Texas! Elden's 2nd helmet.

We are back and settling into our routines again! Our trip to San Antonio was mellow and uneventful. We had thought we might have a day or more to do a few fun things – go to the zoo or take a day trip, however, things like that are difficult with a 2 yr old and 6 mo. old!

Our travel on Sunday, Jan. 11 went fine and we arrived at the house in the late afternoon. The next morning we went to the hospital to have Elden’s head scanned. He was so patient with them measuring his head, putting on the white stocking and taking the scan. Aspen did great too. Darren mentioned that Elden’s head is looking so good. His exact words were “Dr. Jimenez is going to have a cow when he sees this!” We thought that was pretty funny.

The next day (Tuesday) we did not have any appointments and we were hoping to go to the zoo. Poor Aspen woke up with a tummy ache and fever, so we stayed in. The house had several movies, a baby swing and jumper for Elden and some fun riding toys for Aspen. We watched the Sound of Music and a few of the songs are still in my head.

Aspen was feeling better at the end of the day and we decided to go to the mall near the house. She had her first “Build-a-Bear” experience and picked out a cute little camouflage bear. For Pat and I, we went to the Apple store and Aspen played on the computers for a while. She loved this the most and we literally had to carry her out kicking and screaming. Being a devout Mac user, I was so proud. =]

Wednesday, we met with Darren and Blake for the helmet fitting. This helmet is made to “hold” Elden’s head in a few different places. It is a tight fit and comes down lower on his neck and around his ears. It will take a few days for him to get used to it.

Darren and Blake use a mobile “Star Cranial” van that has tools to make adjustments to the helmets. For the final adjustment, we went down with them to the van. They showed us the life size mold of Elden’s head that was made from the scan. Interestingly, all of the helmets are made in Florida. Once the scan is done, it is immediately sent via computer to their facility in Florida, and the helmets are made that same day and shipped out that afternoon. Wow! Dr. Jimenez’ patients are the only ones that get that special treatment (fast turnaround).

We went to have lunch and then back by 2 for our appt. with Dr. Jimenez. It was a craniosynostosis clinic day and there were several other families with babies getting helmets. Some had surgery just days before. As before, Dr. Jimenez had a presence about him. He is always followed by a few residents, and you can tell that all who work for him hold him in the highest regard.

He was very happy with Elden’s progress. He took more photos for the record. We could see from the previous photos in his chart how much Elden’s head had changed. Dr. Jimenez made sure to answer all of my questions and, as before, rested his hand on mine, looked me straight in the eye and made sure I was cool with everything. I really appreciate that – it shows that he cares. He requested a few more adjustments to the helmet and we were on our way.

Our next appt is a few months from now.

Before we left our home town for this trip, we knew a huge snowstorm was coming. As we suspected, when we flew into Phx the next day (Thursday) we were stuck. All roads (and airways!) leading into Flagstaff were closed due to snow. Thankfully our good friends Rob and Amy came to rescue us from the airport and put us up for a few nights. Thank you!!! We were able to fly home on Saturday. Our car was completely buried at the airport and graciously my sister and her husband along with my parents came to help dig us out. Also while we were gone, our neighbors and friends took care of our driveway and all of the shoveling! Whew, what a blessing! We only hope to repay the favors someday.

In addition to the constant gratitude we have for friends and family -- in all areas, especially malls and airports, we also thank God for family restrooms.

One more thing -- While we were gone we received our first email from someone who had found the blog online after her grandson was diagnosed with craniosynostosis. I am so glad she emailed me and I hope we can be a source of comfort for her and her family. We are praying for her grandson and what the next year has in store for him.

Back to Texas this weekend!

Elden is now 6 months old! Time flies!

Two months post-op and Elden is doing great. He is definitely back to his normal baby happy self, and is reaching the normal milestones. He is completely used to his helmet.

The past two months have been filled with adjustments (hence no Christmas card from us this year!). We take the helmet off twice a day – in the morning and at night – for about 30 minutes each time. We wash his head with a warm cloth, and wipe out the helmet with rubbing alcohol. It seems that each time we do this, I notice a different bump or indentation on his head – it is changing so much. I send many photos to our contact in Texas – multiple angles of his head with arrows and circles here and there pointing out the bumps and divets. I will post them sometime. They always get back to me right away and assure me that all is looking well.

Each morning when he wakes up, his helmet is filled with condensation and his hair is wet. He tends to run hot anyway and I am still learning about how to keep him cool enough, yet warm enough during our freezing temperature nights.

In myself I am noticing that I have a constant awareness (a more positive word than “worry”) of Elden and his head. There literally is a HUGE soft spot on his head – a strip down the top center of his skull running about 4+ inches long - with the widest part in the back being close to 3 inches wide. Ack! I am so looking forward to when the bone will completely grow back – in about 6-9 months. Our pediatrician explained the dura (membrane covering the brain) to us and described it as “tough leather”. Even still, I always feel better when the helmet is on – just in case!

I am also beginning to love the smell of my son’s head. It has not gotten too smelly in the helmet, but it has changed the way he smells. It stays on my clothes and I am reminded of him, it makes me smile. I am keenly aware of the brief moments when we take his helmet off. I cherish them, I think we all do. I snuggle with his head and kiss his cheeks like I haven’t seen him in weeks. He is so warm, soft…mine. He greets my shower of love with delight in his eyes and a smiling open mouth. We do love these moments.

With his helmet off, he is so…himself. He is beautiful and perfect. I can tell he feels free and happy. It is a blessing to me to have recognized this. It brings me to those moments with a clear mind and heart – ready and anxious to just drink up the pleasure it brings.

We will be continuing our humble journey this Sunday (1/17) on our second trip to Texas. We have another full schedule with a head scan, helmet fitting, and post-op meeting with the surgeon. We return on Thursday (1/21). It will just be Pat, myself, Aspen and Elden this time. We are looking forward to come nice family time together in between the hospital visits. I have promised Pat that I won’t bring my computer – so no new updates until we get back.

Thank you God for your grounding and ever-present promises that we are still learning about. What a humble foundation for us. And thank all of you for your continued prayers! See you soon!