Two months ago, in mid May, Michael took his very first over night/ week-long trip away from Emma. All the way to Borehamwood, which is a town about an hour Northwest of London, England!! Why so far away, you ask? It was for a work project. That was literally the only thing that could get Michael to finally "part with his daughter" after almost five years of me never having the opportunity to take care of her all by myself, except for when he is gone at work during the day. But I've been doing that well since June 2018. Michael, however, has taken care of Emma overnight several times while I went on mini beach vacations and a short cruise with my parents. With all of Emma's medical needs, she has only had a baby sitter one time, in September 2018, when Michael needed to go to a makeup FX convention for work on a weekend that I also had to work. And that babysitter was one of her primary nurses from the NICU, Billie.
Anyway, my mom came down for the week, arriving on Sunday, May 15th, to assist (medically) where she could, and to give moral support and love. We did teach her how to suction Emma's trach, and she did a good job of that! I also gave her the job of cleaning up after Emma when she riffles through her plastic drawers and throws things out behind her until she finds what she wants- usually her crinkle paper from the NICU-, then promptly scoots away. Emma definitely enjoyed all of her playtime with Grammy and I loved exploring new places, just the three of us girls, and treating her to dinner at my new favorite local restaurant. She also came with me to two of Emma's appointments, which was helpful and fun/interesting for her to see.
We all got in the car and dropped Michael off at the Tampa airport on Monday, May 16th at 7am, but with a layover in New York and the five hour time change "across the pond", he didn't arrive in London until early the following morning! Oh, and he did take the trip with his co-worker/friend, Hannah. We used the "WhatsApp" app and Marco Polo to communicate without fees. So he sent me lots of pictures during his trip and I sent him pictures of what we were doing, letting him know how great Emma was and that she was having lots of fun- we all were! :)
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| Flying over London! |
Emma was a perfect gem during dinner. I brought a small toy to keep her busy if she got bored. Sometimes she will sign "all done" a bunch of times when we are at restaurants, but here she didn't even need the toy. She spun herself around in the stroller, made herself comfy, and relaxed.
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| Butternut squash ravioli- my new favorite! |
Emma rewarding us with high fives after a successful first night of trach care! Before Michael left, I wrote down all of the supplies needed for trach care every night, since usually he is the one who sets up the tray with everything while I hold her trach in and he does all the cleaning. But with him gone, I would do all the cleaning and my mom held her trach in. The following 17 items, as well as the raised table she sits on, are needed for trach care with Emma:
Trach care kit (includes sterile gloves and gauze), extra gloves for my mom, three extra 4x4 gauze squares, one 2x2 pack of gauze, soap and sterile water, trach tie- cut to a total of approx. 5 1/4 inches, Abena trach foam dressing, two double packs of long Q-tips (three of them need to be wet), green pool noodle (to support and "open" her neck when she is laying down), unicorn G-tube pad, toothbrush and tooth paste, foot probe (to monitor her blood oxygen saturation and heart rate while she is sleeping), sticky foot tape, Coban, and sock. We also put her Velcro splints from Delaware on her legs and then big sized socks with the foot cut off over the splints so she can't rip them off in the middle of the night. (You can see her wearing this at the restaurant above.)
On Tuesday after Noon, we did some standing practice with Emma and then in the evening we took her to the pool at our apartment complex. Sadly, that has been the only time we have been in the pool here, and we've lived here since the beginning of April. (There is not a community pool in our new neighborhood, but we have a blow up baby pool we can put in the driveway or backyard/patio for her. Ooh, on Amazon there's one with a little slide and good size swim area for $78! Hello, Christmas!)
Wednesday was Emma's first appointment that week. We had to get her KAFO/ new leg braces adjusted because they kind of pinched her legs in some parts, even though she always has leggings on when she wears them. That appointment took about an hour because it takes awhile for them to heat up the thick plastic and roll it back so it doesn't have sharp edges. The girls there (both named Danielle) are very nice. While we were there, they also measured Emma for a pair of Neoprene shorts by Benik that we wanted to get ordered to help support her hips when standing. Insurance wouldn't cover those.
On Thursday morning, we went to the Sunken Gardens in St. Petersburg, but I am going to make a separate post about that fun, heated outing and all those pretty pictures. There will also be a Part Three to this post, which I will probably write next! That afternoon Emma had physical therapy at 4:30 with Sara. (She doesn't work there anymore and now Emma sees Liliana at 3:45.) In this session, Sara was working on side stepping. Grammy gave Emma a pretty braid for the appointment and suctioned her before we left. I thought it was interesting, but good for my mom, that Emma never needed to be suctioned while we were driving that week. We always suctioned her before we drove anywhere and again once we arrived, and Emma's little body was good with that.
My mom being helpful and unloading the stroller- without me asking! Oh, there is Emma riffling through her plastic drawers. Usually she does it when she is sprinting/ not connected to the ventilator, but she got the tubing to stretch. On Thursday night, we had a great ball throwing session where I was holding Emma on my lap and she threw the ball back and forth with my mom. I got a video to show Michael and she was laughing out loud so much. (Sometimes her laughs are only visual.)
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| Waiting in the cell phone lot |
Thank you, Mommy, for ALL your help- and hugs! We thought about how I probably hadn't spent a full week with my mom since I lived at home, and once she left on Saturday morning, I already missed her! Michael and I thought about pranking Michael's mom and making up a reason last minute for why my mom couldn't come down and asking if she could, just to see what she would say. But she already has enough mini heart attacks with all the jokes Michael plays on her, haha.
And so Michael, the original Supermom, doesn't get gypped in this post, here are some of the pictures he sent me while on his brilliant trip!
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| fancy JetBlue plane food |
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| with Hannah, waiting so many long hours to be able to check in on Tuesday afternoon! |
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| the Loo/lavatory, "or The Whiz Palace as some call it". -Parks & Rec |
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| Outside of Elstree Studios! The sister company called Lifecast, located within Elstree Studios, makes the same hyper-realistic silicone bodies for medical training and simulation. The same work that Michael does here "in the States". |
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| Michael met a guy named Ashley who worked with Nick Dudman, who was the lead special makeup FX artist on Harry Potter, and Ashley has one of the original Death Eater's dark mark tattoo molds!!! |
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| Italian restaurant that Michael and Hannah walked to twice. |
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| Borehamwood police and fire stations. I asked for these photos since he showed me the map of where he walked to "work" on Tuesday, Wednesday, and Thursday. I have an interest due to my 911 work history. (Or 999 and 112 in the UK. Fun fact, mate!) |
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| Souvenirs! |
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