Julie passed several milestones this week…
Julie had a great week! All her appointments went well; she is enjoying the mickey button and had a great visit with relatives. I talk more about the times with relatives in next week’s update.
This past week Julie finished up all of her initial follow-ups with her doctors. She got a good report from everyone. The oncologist found no trace of reoccurrence of the tumor which started all this trouble. Her x-rays were clear and her blood work came back within normal limits.
Julie received her fourth month vaccinations – three shots. She only cried for a couple minutes, but a little “momma time” goes a long way to calm a distressed soul. The pediatrician cleared her for all forms of travel (except motorcycles and sidecars, lol). She has grown nearly 2 inches and 1 ½ lbs in about a month. That places her in the low 25% based on her birth date or about average for her expected birth date.
The surgeon replaced the g-tube with a mickey button in a few seconds. Julie didn’t have time to cry, although I don’t think it hurt at all. He said she was the healthiest baby he’s seen out of the NICU for quite some time. We got some training on the new procedures (more about that in a couple weeks) and we were on our way. Given her growth, we may need to get a bigger button in the next few months, but it’s a piece of cake to replace it.
The SLP was very pleased with her improvement in just two weeks. So, Julie is off the rice thickener and can bottle feed with formula and a slow-flow (#1) nipple. We also have the option of using a #2 nipple with the rice. This new arrangement makes it so much easier for me since I don’t have to make up two sets of bottles (rice for oral feeding and no rice for pump feeding). We need to schedule Julie for another swallow test in August. Otherwise, she doesn’t have another appointment until the middle of September.
The lung doctor took Julie off one of her inhalers and said to stop CPT. The CPT is the famous “beatings” that I have joked about for the past several months – we use a small cup and firmly tap her on the back and side to loosen any goop in her lungs. She was getting 3-5 minutes on each side (right and left). Julie loved CPT. Generally, she fell asleep during CPT. All told, this change is saving us about a half an hour a day. Sadly, we no longer have doctor’s orders to beat our child.
Also, Julie’s oxygen levels were as high as 97% this week. She was 91-92% at the end of June, so she has really improved and is well above the at-risk levels.
Sarah’s weekly allergy shots continue to do her in for a day afterwards, but it’s amazing at her improvement. I survived the dentist with only minimal side effects. For example, they didn’t have to pry my fingers from the arms of the chair. I believe we could have found Osama bin Laden eight years earlier if we had skipped the water-boarding and given the terrorists a dental cleaning. I have my next interrogation, er appointment, in November.
Continue to thank God for her improvements. Sarah and I thank all of you for your prayers, well-wishes, gifts and encouragements.
Andy & Sarah Horn
Despite the good numbers, Julie’s pulmonologist remains worried about Julie’s potential to catch a cold or flu. He wants to avoid stressing her system at this point, so we need to remain careful with Julie until flu season ends next March or April.
The mickey button is so much easier to work with. First, the g-tube extended about six inches, so we always had to dress Julie in clothes to hide/conceal/hold-in-place the g-tube. The mickey button allows Julie to wear looser clothing, although Sarah and I still suffer from paranoia that the button will jump out when we’re not watching and we will have to chase it through the streets.