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!

Headed Home! (no pun intended)

Hooray! Our last day of going to the hospital and our last day in San Antonio. Elden is still doing great. He wore his helmet one hour on, one hour off today. It is still hard to get it on him, and when he gets mad it really heats up around his head, but he is slowly getting used to it.

Here is Elden with Dr. Jimenez – our favorite neurosurgeon in the whole world. Elden isn’t too happy here because they just took the helmet off. Dr. Jimenez is happy with his recovery and we have our next appt. set for Jan. 20. Our flight leaves tomorrow around 2 pm and we get into Flagstaff a little after 5pm. It will be nice to be home!

We just want to say thank you so much to everyone for prayers and support. We couldn’t have done it without you. We are so blessed to have so many wonderful friends and such caring family. Through this we have all grown and learned so much. Most of all, our faith is re-affirmed as we focused on our God who is sovereign and has once again given us His grace and mercy. All you can do is put it into His hands.

After we get home, we will post periodically about Elden and his progress. If you are reading this because you are in a craniosynostosis situation, please feel free to contact us anytime at ideatreedesign@hotmail.com, we would love to talk with you.

Elden's Helmet!

Today we got Elden’s helmet! We were at the hospital for several hours while they made slight adjustments for a proper fit. It is a cute little clear plastic helmet with foam padding. It fits real snug around his head and will help mold his head while his brain grows over the next year. Otherwise, his skull would grow back the way it was.

It will take several weeks for Elden (and us) to get used to his helmet. He really doesn’t like it when we put it on, but once it is on, he seems to be ok with it. We are starting off slowly with a 1 hour on, 1 hour off schedule. And we will increase the time he wears it until he is wearing it 23 hours a day – in about a weeks time. Once he wears it 23 hours, we will only take it off at diaper changes, when we get him dressed and bathed– all of those small increments of time over the course of the day should add up to an hour. He will take naps in it and sleep at nighttime in it. Every time we take it off, we will need to clean it out with rubbing alcohol. Elden will wear a helmet until he is at least 18 months old. We will come back to San Antonio several times over the next year to get another scan and another helmet (because he will outgrow the helmet), which takes about a week each time. The next time we will come will be in 6 weeks.

There wasn’t an option to have a colored helmet, bummer!. They said we could paint it, but we don’t feel comfortable with him sitting in a painted helmet (off-gassing of paint?) So, we are going to get stickers to decorate it. We can have fun with that!

Today (Tuesday) was also Mom’s (Grandma’s) birthday! We went to a seafood restaurant on the River Walk to celebrate. Happy Birthday Mom!

On Wednesday we will go to the hospital one last time for our follow-up appointment with the surgeon at 1 pm. And tomorrow we will head home. Hooray! We will probably post one more time before we leave. Thanks everyone for joining us on this journey!

Better Days

Thank you so much for your emails and posting comments! And thank you for your continued prayers!

Elden had a great weekend. He was swollen through Saturday, but woke up Sunday with little to no swelling. It really is incredible – his recovery. He was able to take some Motrin without making him sick when his tummy was full. So, we alternated Tylenol and Motrin for him every three hours through Saturday. On Sunday, he was just on Tylenol every 6 hours and come Monday, we are only giving Tylenol to him if he seems to need it. He is a tough kid! We are all amazed at how well he is doing. He is just back to his normal happy self. And he seems to have found his voice – he squeals and screams with happiness and joy quiet frequently now. It makes us all smile and laugh. We just stayed at the house this weekend so that Elden could recover. We gave him a sponge bath and he even did a little tummy time.

Aspen is doing better after a few nights of cuddles. She doesn’t understand what happened to Elden’s head and wants to put band aids on it. She is such a good big sister – always bringing toys to her brother. She loves the stairs here and is having lots of good quality time with Grandma and Papa Tony.

This morning (Monday) Pat, Elden and I went back to the hospital to get another head scan. It was the same process as the week before with the StarScanner. He got little stickers by his ears as markers, and the cool white do-rag again.

This time he wasn’t too happy about it. He is just tired of people messing with him. We go back tomorrow (Tuesday) at 10 am to get his helmet and for the helmet fitting.

The rest of the day today, we went to Brackenridge Park, rode the train, and went to the Japanese Tea Garden, and then ate more yummie BBQ.

Stay tuned tomorrow or Wed. for photos of Elden in his new helmet!

Night / Day after Surgery

…so, a few hours turned into the whole night pretty quickly. Aspen did well without us last night, which is a relief. It is now 2:15 pm on Friday and I just got the password for the hospital internet, but can’t post because of their security. Elden is doing so much better, but we had a looooong, rough night with little to no sleep. He had to have a few more doses of morphine because he couldn’t keep the Tylenol or Motrin down. I would feed him and think “Yes! He’s eating!” and then he would just throw it up with the medicine they gave him. At this point, Elden had throw up on all of his and mommy’s clothes. My mom had to come bring us new clothes. I felt really discouraged this morning about it. All of the other babies have gotten to go home, and we are still trying to get Elden to eat. Poor thing, we just want him to be comfortable. His head became swollen. It may be hard to see from the photos, but it is swollen pretty wide to either side of his head, and it makes his ears droop down a lot. This is normal for the first 4 days, but still looks alarming to me. It is also hard to think about the space that is there now from the bone that was removed – I am afraid to touch it – to hurt him.

He is doing well – just uncomfortable and sometimes in pain. We are trying to keep the room dark and quiet for him. Even the slightest noise and movement seem to startle him. While nursing him, even the movement of my breath would upset him. We had several attempts throughout the day of feeding him, giving pain meds and he would get sick – so they had to give him more morphine. Our goal at this point is of course to get out of the hospital – get him to eat, poop, keep the meds down, get him off of the IV. Finally early afternoon, he woke up from a nap and seemed to feel better. I was able to feed him, and then give him Tylenol. All right – he kept it down! We narrowed it down to the Motrin being the culprit – making him sick.

Grandma, Papa Tony and Aspen came to visit. They had to wait in the ICU waiting area on the 8^th floor. Pat and I would take turns going down to see Aspen. She wanted to see her brother so bad and didn’t understand why she couldn’t. I would take photos and video of Elden and bring them down to show to her. That helped a little. Most times when I went back down the hallway to the elevators, I could here her crying “Mommy!”. Poor thing!

Dr. Jimenez came around 3:30 pm to check on us. At that point, I decided to hold Elden in my arms and walk him around. He seemed to be getting bored of the laying in bed position. Elden loves to be held upright to look around and check things out. As we were walking down the hall, Dr. Jimenez came through the double doors right in front of us. Elden took one look at him, gave him a big smile and laughed. At that point, Dr. Jimenez said we could go home if we felt comfortable with it. He mentioned that Elden had more swelling than normal – probably because he had to make so many more incisions in the bone to the sides of Elden’s head. Elden would have “dependent edema” for a few days which means that whichever direction his head was placed, the swelling would move in that direction. You can see from some of these photos that his ears look droopy and wide to the sides – because we had him upright, that was were the swelling was settling.

We were definitely ready to go!

Grandma, Papa Tony and Aspen came to pick us up and we left at 5 pm. Elden slept during the ride home. We were so tired, we just ate and then went to bed. Elden was great last night – he kept his normal schedule of waking up a few times to eat. I am getting used to holding him to nurse. And he is getting used to moving his head around again. I am sure it feels different to him. We gave him Tylenol or Motrin those times to control the pain, and he is doing great! The smiling photo of him in Pat’s arms with the animal pj’s on is from Sat. morning. Amazing!

We are just going to lay low this weekend to help him recover. We have our next head scan Monday morning at 8 am. We hope you are all doing well, thanks again for your prayers! We will post again early next week.