Barb Smith with ABC4 interviewed our family regarding our experience with infant botulism. Below is the video, and our story once Jonathan was allowed to come home.

Coming Home

When Jonathan was discharged from the hospital he was very weak, months behind in development, and distrusting of almost everyone, especially me. He had severe oral aversion and wouldn’t let anything near his mouth.

Because I moved into Jon’s hospital room during his stay, he associated me with the pain he had suffered. When I would try to feed or comfort him, he would arch his back and flex his entire body in fear.

Tim began working with Jonathan to teach him how to drink from a bottle and be a baby again, and I worked on slowly earning his trust.

While in the hospital, Jonathan suffered through intubation, a spinal tap, an MRI, Cat Scan, hundreds of blood draws, IVs, the placement of feeding tubes (that went up his nose down into his belly) a machine that forced air into his lungs creating an artificial cough, multiple gags, and numerous other painful procedures. It took us months to teach him that he was home and safe.

Tim researched how to overcome oral aversions and patiently worked with Jonathan for hours each day. I managed his feedings and stayed awake at night to be sure everything went OK. Because he was fed through a tube that went up into his nose and down to his belly, he had to be closely monitored. Babies that are fed this way (NG feedings) can easily displace the tube, or try to remove it altogether. If this happens during a feeding, the baby can aspirate (his lungs fill with liquid) and it can cause pneumonia or worse.

It was exhausting for both of us, but we were so thankful to have Jonathan home from the hospital, that it was worth all the work and stress.

Success with Feedings

Finally, after weeks of patient attempts, Tim was able to encourage Jonathan to drink a few teaspoons of milk. He continued working with Jonathan until he drank an entire ounce. This was a tremendous victory! It took weeks before Jonathan had the strength and desire to drink more than an ounce at a time, but eventually he did.

Germaphobes R Us

Now, we just had to keep him healthy. Because he was so weak, it was imperative that he didn’t get sick. He was diagnosed as immune compromised, and we were told to avoid crowds of people and “shared air space.”

Tim purchased air purifiers for every room in the home and we quickly became germaphobes. We didn’t go to movies, church, busy shopping centers, and avoided having people over. We even missed family events (including Christmas morning) because we couldn’t risk bringing home any germs or viruses to Jonathan. It was a long winter.

Happily Ever After

The good news? We made it! Jonathan is now healthy and happy. Our family is eternally grateful for all the miracles we witnessed during Jonathan’s battle with botulism, and all the support we received from our family, friends and employers.

Although I would never choose to repeat this experience, there were joys and times of gratitude that are so intense that the memories are sweet and beautiful. And even though I may not have been a super-duper sweetheart in the hospital (I gave the doctors and nurses an earful more than once!) I am also very grateful for the love and care he received from the staff at Primary Children’s.

A special shout-out goes to Tracey, Carrie, Kristin, Megan, Denese, Jessica, Dr. Osterling, Dr. Laarman, and Dr. Sakonju. I love you all to the moon and back!

Related posts: Blame it on the Frickin Contacts, Frickin Mommyhood, and Infant Botulism, a Frickin Nightmare

Our son was diagnosed with infant botulism and had to spend 3 months in Primary Children’s Hospital last summer. It was a trying time for the entire family.

We told our daughters that when he got better we would celebrate with a Disneyland vacation. The good news? He got better! The not-so-good news? We were buried in a mountain of medical debt.

By February, we needed a vacation- really bad. The question was, how would we pay for it? We are firm believers in the Dave Ramsey school-of-thought, and are against financing vacations with debt. So, what do you do?

You research, plan and budget.

Below is how we took six people on a Disneyland vacation for less than $1300.00.

How to Save Money at Disneyland

Tips for stretching your dollars and having a fantastic vacation without breaking your budget.

Disney Tickets

Never, ever pay full price for Disneyland Tickets. Instead, look on Craigslist.org, KSL.com, (or your local classifieds) and you can usually find another family that will split the expense of Park Hopper tickets. Six-day Park hopper passes are approximately $160 each. If you split the tickets with another family, each person can park hop for three days for a mere $80. Our total cost for three days at The Happiest Place on Earth (for five people): $400.00. (Note, Park Hopper tickets are only good for 14 days and are technically non-transferable. There’s my disclaimer. )

Disneyland Hotels

You can usually find a hotel in Anaheim for less than $50/night, but you may have to room with bed bugs. As much as we love a good adventure, we decided against this. We researched hotel rooms a few minutes each evening for about a week. We found the best deal through Bing (sorry Travelocity, Hotels.com and Expedia- Bing really does have the best deals on hotels.) We booked a suite at the Double Tree that comfortably slept six for $105.00/night. Total cost with taxes: $362.25.

Food

Food can really break your budget. I planned our meals ahead of time and it saved us a ton of money. I went to Costco and loaded up on drinks, pastries, sandwich food, snacks and fruit. We ate breakfast in our room each morning, and came back for lunch. We only ate in the park once, and chose close restaurants like Denny’s and Subway for dinner. For our one meal at Disney, we splurged and chose the Blue Bayou. It was a little expensive, but worth every penny. If you want a fun experience, make a reservation ahead of time and request the waterfront. It is frickin awesome.

Another quick tip: Pack a backpack with snacks and drinks. This saved us loads of money. We took a pack that kept drinks cold and we stayed hydrated all day. Disney also rents out lockers. If you want to pack a lunch, you can lock it up and eat it later. The lockers are a little small, so plan accordingly. I would recommend an insulated lunch box during hot summer days.

Food for five days: $290.00. (If we subtract the Blue Bayou, our food budget was $161.00.)

Trinkets

You can’t go to Disneyland without buying your little princess some Micky Mouse ears. This is absolutely forbidden. We budgeted $100 for souvenirs, but only spent $50.00. My sister went to Disneyland with her family a few weeks before and was also on a budget. They agreed to take a timeshare tour and earned $200 Disneyland bucks. As much as I adore time share pressure, we opted out of this recommendation. However, if you are strapped for cash, it is a good way to go.

Fun Disney tip: If you buy a balloon and lose it or it pops, Disney will replace it for free. Just show your string (or your moist-eyed child) to a balloon vendor and they will hook you up.

Total spend on souvenirs: $50.00.

Anaheim Transportation

If your hotel does not offer a free shuttle, you can either take a bus or pay for parking. The ART (Anaheim Resort Transport) picks up every 30 minutes and drops you off at your hotel, or very close-by. Check with your hotel, because they most likely offer discounted Day Passes. Otherwise, parking at Disney is $14/day. If you have a large group- parking may be cheaper. For us, the bus passes were more convenient. My kids hated the long walk from Disneyland to the parking garage, and preferred taking public transit.

Gas

Do you have an iPhone? Wait a minute; you don’t? Well, I can sell you one with a little water damage. Anyway, it is worth downloading the Gas Buddy application. We saved a ton of money by planning our gasoline stops. On average, we saved up to $10 every fill-up. The application even provides a map and directions to each gas station. We budgeted $200 for gas and saved $74 due to the frickin awesome Gas Buddy. Total spend on gas: $126.00.

So, there you go!

Question- was following this budget inconvenient? Tim would say, “Yes, abso-Frickin-lutely.” I say, “Yes, at times.” However, for us it was worth the planning. We had an amazing time and really didn’t feel like we were missing out on anything. In fact, it made me feel better about the trip, because we were being responsible and not spending money that we didn’t have. In fact, we got back from the trip and paid off a hospital bill. To me, that is success.