Merry Christmas

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Exhausted doesn’t even begin to describe it, but thankful beyond belief. 2 days in a row, we ventured out with both kids…both days there were huge hurdles (car sickness, a tantrum, desat, all of us having anxiety attacks, etc – many more things to add to the current Gregory family PTSD caseload lol)…but we did it!! We got one family picture with Santa in the mall, and our kids look miserable. 😂 We had 4 incredible nurses (at mostly different times) over the past 2 days helping us, and it was literally all hands on deck. Our family did everything they could to make this Christmas as easy and happy for us as possible, and gave so much love and attention to Juliana & Brenden, so we could take short breaks, to eat at the table & relax on the couch for a few minutes… and just to let us feel like human beings for once. This year was the craziest Christmas of our lives, but I wouldn’t change a thing because we were all together. ❤️ I’m feeling very emotional, but it’s so true. I hope our children always know how much their Mommy & Daddy love them and just want their good health & happiness above all in this world. I hope our family (including our new family – Brenden’s nurses) know how much we love & appreciate them. 🎁🎅🏻🤶🏼❤️🎄

Merry Christmas everyone!

It took me 3 months to write this… 🤷🏻‍♀️

Hi everyone! Happy holidays!

It has been quite a while since my last update… But life has been so crazy that I really haven’t had a moment to sit down to put my thoughts together. Usually when I do have that time, it becomes a bit overwhelming and I have to pull myself out of it & make myself busy again. However so many people have been reaching out wanting to know how everything is going with Brenden at home… So I wanted to be able to put together one of these to catch everyone up…

((Warning:: This is extremely long…it’s 3 in the morning and I hope this all makes sense…))

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^^Pictures from a very special photo shoot that was donated to us by Julia Xanthos Liddy!^^

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Since coming home, Brenden has been doing really well! He is currently 8 months old (7 months adjusted). He is always happy, smiling and playing! He has also been getting so much stronger! He has almost a full range of motion of his arms and legs… His neck is much stronger and he can hold up his head for short burst of time. He can shake his head back and forth (making him a natural at nosey-nosey, while also effectively fighting when we try to suction him).  He can grab and hold onto toys now and hold them over his face for extended periods of time. When he first came home, he couldn’t do most of these things. He cannot sit up yet…but he can roll over with minimal assistance & has become a pro at practicing tummy time. He is very verbal and babbles a lot! It is the sweetest sound ever, because at one point, we never knew if we would ever hear his voice! He has now said “hi”, “hello”, “wa wa” (I swear he meant mama)….and he can mouth other words, but he seems to struggle to coordinate making sounds and moving his mouth. He often just yells out to get our attention and it works. He also says “Ahhhh” when I ask him to open his mouth and say “Ahhh” for suctioning. Lol He will be starting speech/feeding therapy on Monday, so we hope to see big improvements in this area.

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Speaking of services,  after a lot of fighting and advocating…in late October, we finally got therapy services started! Yes, that means it took over 2 months from leaving Blythedale to get ANY services! With the help of a family friend, we found the most amazing OT…The service coordinator helped me find a PT… And our OT helped us find a speech/feeding therapist. The OT & PT have been working wonders with our boy and they are looking to increase the number of sessions per week. Additionally, we are fighting to get Brenden Special Education services. We were told that babies don’t need speech/feeding or special ed because “they are just little babies, what can they really do?”…but we know that every bit of therapy is helpful & it is better to be PROACTIVE than to wait for trouble. So, also after numerous emails and calls and legal threats…Brenden will be re-evaluated by a special educator to see if he can get services. Our OT introduced us to a special educator who met Brenden and believes he truly could benefit from these additional services. Plus, we finally got approval to start feeding/speech on Monday. It is simply amazing how the system is set up to make it difficult to get a child the help they need. It’s really ridiculous that if you don’t fight like crazy, nothing will happen!

There have been other things that are similar in difficulty since Brenden’s homecoming. For example, getting the supplies sent CORRECTLY took months. Having multiple respiratory therapists come to set up machines incorrectly, the DME & enteral feeding company delivering (or forgetting to deliver) minimal supplies and having to fight for more. Trying to get 24 hour nursing and finding a “good fit” when it comes to nurses on Brenden’s case. In the beginning, we had quite a disaster with certain people we met (from 2 different agencies), but now we seem to FINALLY be getting together an amazing team of nurses from 1 agency that are knowledgeable, skilled and actually care about our baby. We have a few truly exceptional nurses that go above and beyond…ones that encourage him and care for him as if he was their one…like one of our nurses that made it possible to bring him to LI for Thanksgiving by coming 5 hours early to work…and always coming whenever we are stuck and she is free. Some of these nurses are becoming like family. It’s crazy and wonderful. It’s just a lot because there are so many nurses on our team (Over 20), although there are a few regulars. Think about it…a month has 60 shifts to cover…and most of our nurses also work in hospitals and do this on the side.

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So, thanks to nursing, I have been working full-time since school began… Although we did have a 3 day hospital stint for rhinovirus (common cold) & I did take two weeks off to tend to numerous doctors appointment for Brenden, Juliana and myself. It’s been really rough, you guys. I can’t lie. I’m exhausted, and drained mentally & physicaly. Mike has been trying to work from home and it’s practically impossible. There’s just so much going on in this apartment. He has to entertain and take care of Juliana, keep up with Brenden & the nurses, be there when different therapists come, making a thousand phone calls, organize supplies, restock his room, etc…it’s a lot. When I work (& I have to because I have the insurance coverage), I have to run home afterwards to do a million things for both kids (normal stuff and then medical stuff…besides the fact that before I even kiss them hello, I have to jump in the shower and change from school!!). Then add in we also have to take care of Bailey & Kiki! ❤️👨‍👩‍👧‍👦🐶🐱❤️Like I said, we have a pretty great nursing team now, but still there isn’t always 100% coverage (although they do try). For example, Mike, Juliana and I are all currently pretty sick. The nurse for today called out because she was hospitalized…the back up had pink eye. The agency had to scramble to get us coverage because being near Brenden with a cold would be very dangerous. He can’t catch a respiratory illness. A slight case of rhinovirus hospitalized him for 3 days (which meant I stayed awake for 3 days to be his one to one nurse, since they can’t offer him that support in the PICU) and he was on oxygen support for over a month. We had to fight and plead with insurance to get him the RSV shot…and he’s up to date with vaccines and flu shot….but the risk of him getting sick is still huge. So, now that I have been sick, I literally haven’t held my baby since Saturday. We had to scramble to get full coverage. So, there is constant stress about coverage, as well as ensuring he doesn’t get sick, as well as trying to stay on top of cares (making sure each nurse is on the same page since we have about 20 different nurses). Plus staying on top of equipment reorders, trach changes, just knowing who has to do what and when…it’s a lot to manage. I’m always tired. Have I mentioned I am tired? Lol

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Anyway…

We have been seeing the neuromuscular clinic at Columbia. We went in October & it was a very interesting appointment. It’s the craziest thing to sit there and talk about all the reasons that you were spastic as a child to kind of give them information about where this disease come from. For example, the doctor asked and I quote “so when you were a child you must of been terrible at sports”… I was like “yea, but………..😑…..I tried!” 😩Anybody who knew me as a kid new that’s true LOL but it is what it is!

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Anyway, those doctors took their baselines and made some small adjustments to Brenden’s vent…he is usually breathing now between 98-100% oxygen so all is well there! Brenden is meeting his own milestones… He’s doing so many things that they thought could never be! He is coughing now, for example! He could not do that before. He is swallowing some. He is able to clap his hands and laugh! His feedings vi gtube have increased. I say it over and over again… But we are so incredibly blessed!

The best news came in mid November. He needed a MRI/MRV to check up on the subdural

hematoma (bloodclot outside of his brain)

he was born with. Let me tell you, it is a very complicated procedure to get a complex child into an MRI machine. They can’t give someone with low muscle tone general anesthesia because there is are Malignant Hypothermia Precautions (basically a bad reaction because the body can’t process that type of anesthesia well and it could be fatal) so in order to take an MRI, they had to give him Ketamine to get in an IV (because finding a vein is impossible), then IV anesthesia…to knock him completely out (because even though he has low muscle tone, he moves too much for an MRI)…all while he needed constant suctioning. It was quite an adventure to be in the MRI room that morning, but amazing because they let me help him with our nurse right until the machine went on. When he came out, he had a moment in recovery where is lips turned dusty and blue…his home nurse and I were able to notice this before the machines picked it up. We started to work on him and hook him up to oxygen. By the time the

machines alarmed that he was desating, and the doctors/nurses came running…we had already brought him back up to baseline because we were ready. And here comes the greatest news: the blood clot is gone! It has completely resolved! Thanks God!!! 🙌🏼🙏🏼

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Back to the alarm thing…someone asked me a question that for some reason truly feels like a stab in my heart when I think about it. I was once saying how when we don’t have night nurse coverage that I can not sleep because I need to stay vigilant and watch over Brenden, as the nurses would. I was asked “is it because you CAN’T sleep or because you CHOOSE not to sleep? The alarms will go off when he is in trouble and that will wake you.” Well, I guess I do choose not to sleep because I CHOOSE to kee my son safe! The threat is that if I wait for alarms, it is too late…why do I want to wait til my child is in trouble or distress to react? My plan is to keep my son ALIVE AND HEALTHY! If I stay awake, I can keep him comfortable and safe…no risk of anything bad happening to him…because in a moments time the world can flip upside down for a child with a trach. I am not exaggerating when I say a moment, either. Yes, there might be others who nap or sleep with a trached baby, but that’s not a risk I am willing to take at this point. Plus, I’m so exhausted lately that I sleep very deeply so I can not guarantee an alarm will ever wake me. Eventually a nurse comes back (the longest I’ve had to stay awake was 42 hours with an hour nap and 1/2 nap in between because of stacked work, my own doctor appointments, Julinas’s swimming class and a sick nurse- but that long of a time doesn’t happen often).  Anyway, the occurrences of no night nursing are less and less these days…but the next person to ask me that question or question what I need to do for either of my children or give me unsolicited advice when they have NO CLUE what it is like may get punched in the face. 😑

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Aaaaanyway….I am not sure what to think myself about all of this and have been finding myself with a stronger connection to God. I won’t get all biblical on you now but let me just say that after you’ve seen the things that I’ve seen…after you’ve witnessed sickness being cured in your own child…you realize that anything is possible. I think back to the horrible 48 days when Brenden was so sickly in the NICU and still can’t believe how far we have come! Faith is an incredible thing…the hope that’s something greater is helping us along. Sometimes I truly feel like we are alone and it’s just us against the world…But then something always seems to happen to remind me of someone out there that I can’t see has my back. 🙌🏼🙏🏼

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Oh and before I end this…I want to say that Juliana is the most amazing little girl in the whole world! She will be 3 in January but is astounding in the way she speaks and her true adoration of her brother. She is so bright that she did amazing in an interview to start preschool early (she will start in January even though kids don’t usually start until the September that they are 3). She speaks very eloquent for a child (must be all that Peppa Pig? 🐷 lol). She has been going to swimming class (and she’s shown an incredible amount of progress) since she was 6 months old, but this will be her first real school like setting! She is so smart. She even questions nurses to see if they are doing Brenden’s cares correctly (lol I wonder where she learned that from) and calls herself Doctor Juliana. For example she will come into his room and say “did you do his cough assist? You know he needs 3 rounds of 3. Also, he needs a suction…” 😂 She loves Brenden and always wants to cuddle him and is always concerned about his safety. One night she begged me to hold him. We sat her in a chair and with the nurse and I supporting Brenden, we let her hold him for a while. They started babbling to each other and were deep in conversation using no real words…smiling and staring deep in to each other’s eyes. When it was time for both of them to go to bed and I picked Brenden up, both of my babies started sobbing and reaching for each other! I’ve never seen either of them cry that way before…eyes filled to the brim with tears and longing! The bond they share is very special and inexplicable…it’s such a beautiful thing, truly.

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All that being said… Things are pretty good. There are days that I don’t have nursing coverage and I don’t sleep for three days on end. There are days that Juliana needs me more than Brenden does. There are days I feel so run down. There are days that I feel like it’s so hard to get out of bed. However the majority of the days are truly bright because ALL of the days I am thankful to wake up and be my children’s mother.  I am incredibly lucky. I have a sweet, brave, nurturing daughter who always wants to be involved and loves helping out with my sweet, brave and strong son! Most of the days I wake up smiling because my children are my world…and hearing/seeing their happiness and laughter is the greatest gift. I am also blessed to have my husband, their father…who despite the incredible rollercoaster we have been on together…all the ups and downs and ups…is by my side with the same priorities in mind. Our children come above all. I couldn’t do any of this without him. We have a crazy partnership that just makes things work. We may be a bit grumpier about things, it’s true. For example, we heard another parent complain at the pediatrician’s office about how hard it is when their child won’t sleep through the night. We gave each other a look and a straight stare that was really a telepathic eye roll, and a little laugh. Yes, we once thought that was hard, too. It is! We were in the parenthood club with the masses and were totally there. We all go through it. But now, we are in the stealth secret special needs parenting club…no one really gets it unless they are in the club because most don’t even know this club exists! So, maybe when you read that you thought “wow, what a jerk” of me, but it isn’t til you see the other side of things that you can know how life really works. 🤷🏻‍♀️

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On that note…I wish you all a Happy Chanukah/Hanukkah (no matter how you spell it), a Merry Christmas and a Happy New Year! Our family pretty much celebrates it all…as we should, because we have a lot of reasons to celebrate! ❤️

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Thank you all for your continued support and prayers!

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xo