Day 878 - 1st Train Ride 🚂, Tiny Bites 🍎, & a How To ❤️
Sunday, May 21st, 2023 - Saturday, May 27th, 2023
On Sunday, Family Day, James experienced his first train ride. We went to the Florida Railroad Museum and took 1½ hour train ride. We were able to sit both inside and outside. He screamed when we sat outside; it was hot! 🥵 James much preferred being in the air-conditioning and completely changed his tune! He wanted to sit by himself on the seat and he rocked as the train moved. James waved to the volunteers at the train turned around. Afterwards we had a busy day and took him to lunch and a few stores while we were in the area. We tried grits again but James acts like we are trying to poison him. He isn't a big fan of the texture yet. After eating, we checked out Buy Buy Baby since they are all closing to see if they had any good sales. No, not really. 😂 Also, went into Lowe's and Sprouts which are his favorite. There is just so much to look at!
On Monday, Dad worked with the early intervention therapist while Mom was at her Doctor's appointment. The therapist saw that Dad already had James in standing, using his guitar as an incentive to stand up. James took his first bite of an apple. 🍎 Although when the small pieces ended up in his mouth he immediately got them out. Baby steps! It is so good that he is interested! Mom also let him explore the kitchen Montessori style. His new favorite thing is pulling all of the dish rags down off of the oven.
Our Medicaid Case Manager stopped by this week in person. She let us know that out of all the equipment, the feeding pump was the only thing we now own. The way typically works is that after you have rented medical equipment for a long period of time you eventually own it. Of course the feeding pump recently has been making really horrible sound and when Mom asked the Facebook groups for advice most of them said that their machine also made that noise, right before it died. 🤦🏻♀️ Our goal is to get our feeding pump switched out before a road trip. Since James is on continuous feeds if his feeding pump died we would have to go to the hospital.
📞 We also heard back from our DME (medical supplier) but they could not help us with a pediatric portable oxygen concentrator. Basically we were on our own to find a DME that could help us. One option was to get a script from the pulmonologist and then call around to all the DMEs to see if they carry the item and would accept the script. That option would probably take months because you also have to wait for insurance to approve and typically they need a letter of medical necessity after all of that. The second option was just buying it out of pocket on some medical website. We were on a time constraint with leaving for our road trip in a few weeks. So that is what we did, Mom found a medical website that said you needed to be a health care provider in order to purchase so Mom created a profile that looked pretty legit. 😂 We paid for the portable oxygen concentrator and waited for it to be shipped out. 🚚 Well it turned out that they had already sold that item and they ended up refunding us. Back to the drawing boards! The next day Mom ended up finding another one. Of course this one was more expensive, over $1,300. 💰 It was a much more smooth sailing of a process because it was shipped out immediately and we received it on Friday the 26th! This portable oxygen concentrator would replace all oxygen tanks and our large home oxygen concentrator. We wouldn't have to bring those at all on the road trip. More importantly we wouldn't have to carry all those things in and out of hotels every night. 💪🏻 This was just like a really large purse!
Mom managed to get some nasal cannulas from some other Moms on Facebook. 👩🏻💻 We have been paying for them out of pocket on Amazon, going through one a week. It's crazy how they make different brands of medical equipment and some are nicer than others. Why can't they just all make the nice ones? On Thursday night, Mom took a photo of the pulse machine while James was not on oxygen. He managed Thursday, Friday, Saturday without oxygen overnight! 👍🏻
Our physical therapist who seees James twice a week has been looking into getting a different representative to help us from Custom Mobility 👨🏻🦽so we can eventually get this gait trainer. We are specifically looking for a Mini Rifton Pacer Gait Trainer. Unfortunately we haven't heard from our representative in months. This is just taking way too long! Thank goodness we have a PT who is willing to get involved.
🤰🏻😁 Mom had her OB appointment and everything went great. 😍 Baby girl is measuring 2 days ahead! See the GIF below of her moving around. We are so excited for this next chapter! 📣 Shout out to the ladies who have been the cheering section for Mom over the last 2 months! 👏🏻 Checking up on Mom every step of the way! Nikita, Maria, Tiffany, Lisa, Rachel, Holli, and Megan! It's been so nice to celebrate the progress of this pregnancy! During this time, it's important to surround yourself with supportive caring people. Some have been on the same exact journey with IVF, experienced loss, and/or are also currently pregnant. 🥰 Others are just good empathetic friends. Love to you all!
We know that it can be confusing at times to know how you should react, support and be there for a couple going through a new pregnancy after IVF, or a pregnancy loss, or just infertility as a whole. Most people will choose to be silent to not say the wrong thing. We thought that it might be helpful in giving some suggestions on what to do.
How to support a friend or loved one
1. Follow their lead!
We have been very vocal about our experience in public and on social media. If there is a couple who prefers to keep things tight-lipped they will not share the news. In our case however we would love to talk about it! Are we nervous? Of course! But if we block out the fear in the chance that something could go wrong we also block out the joy of what could be a completely perfect and full-term pregnancy! Positivity is a choice and the happiness of your life depends on the quality of your thoughts. We choose joy. ❤️
2. Listen and let them know you care
Infertility, pregnancy loss, and being pregnant after IVF is very isolating. It's never too early to be supportive of a pregnancy! If the couple has shared the news that they are expecting (especially on a public platform like this blog) then they are looking to family and friends for support. We would love to celebrate and share our excitement with you! ❤️
3. Provide a source of normalcy
We have gone through so much with IVF over the last 5 years. Two egg retrievals, five frozen embryo transfer cycles, four frozen embryo transfers, a stillbirth, a natural miscarriage, a chemical miscarriage, and thousands of injections. When you get to the point of being pregnant you just want to have a normal pregnancy. Oftentimes when women go through infertility treatments that becomes so much of what they do and who they are at that time. Being treated like a normal pregnant couple is all we ever wanted! ❤️
Every couple’s journey is different and unique. However, if someone has experienced a loss (any loss) or has received the excellent news of a positive pregnancy (IVF or not), we can guarantee you that everyone wants to hear the same words, "Thinking of you!". It is a way of acknowledging without asking questions. Be patient and understanding and continue to be there to support them. Especially for a couple who have shared the details of their frozen embryo transfer from Day One on a public blog. 😉 They would love the support and to also celebrate! Hope that helps! ❤️
Oh I could just cry for you. Such joy!
ReplyDeleteThank you! ❤️❤️❤️
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