Sweet Lylah

08/15/2023

Hey everyone!! It has been soooo long since I have posted on here. Life has been so incredibly busy. So much going on. So let me update y’all with some things in our girls life. It’s going to be a long one!

Her lip is healing AMAZINGLY. She has gotten used to it and loves to feel her lips together. We WERE still fighting the plastic surgeon to get her Palate fixed but we have kind of decided that we are going to wait. So back in the beginning of July she had whats called a swallow study. Basically she sits in a big girl chair and they use an x-ray machine to watch how she swallows when we give her liquids and purées. She failed that. She was aspirating on everything and just couldn’t get it down. So we want to work on her swallowing before we worry about putting her under for another surgery. We have came to terms with this decision and think it is what’s best for our girl.

She started speech therapy along with her occupational therapy and physical therapy. Speech is twice a month, OT and PT are 4 times a month. We are working on sitting up, holding her head up, and communication. It’s not going as well as we wanted but she decides what she wants to do when and how she wants to do it. She has the best and most understanding team, they are working really hard to get our girl where she needs to be.

Seizures. She has a cluster probably every other week. So around 4 every 14 days. She has had a couple more recently but we are pretty sure it’s due to teething. She is cutting around 5 teeth at one time. Late bloomer but it’s all coming in at once. Poor girl. She is on three different medications for her seizures and they all seem to be doing what they need too.

That’s all I got this time. If I missed anything or you are curious just ask. We stay pretty busy these days.

03/29/2023

Hey guys, I haven’t posted to this account in a while. I posted mostly on my personal page because it’s been so crazy.

So for those of you who don’t know our Ly girl had her lip reconstruction surgery on March 8th, we went in around 3pm and they were done around 530pm. It was so quick. We stayed overnight, her oxygen dropped a couple times during the night but that was to be expected. She did have one seizure in hospital but not during surgery. It was after while switching from recovery to the floor. We went home the next day. She has been doing so good since. She hated it at first and She sometimes forgets she has to open her mouth now but she is getting it at her own pace. After surgery she basically became a new baby. She is laughing and smiling at us. She has been queuing when she is hungry. I think we may need to take her feeds up. She is moving her arms more and holding her head up a lot. It’s truly amazing.

02/22/2023

Alright everyone! The countdown begins!! 15 days until lip surgery!! They cleared her through anesthesia today. As long as she doesn’t get any sicknesses between now and March 8th we will be good!!

12/29/2022

Hey everyone!! It has been so long since I posted anything, we have been very busy with the holidays. I hope everyone had a wonderful Christmas! We sure did even though Lylah had the flu. She tested positive for both flu A and B last week. She was a champ. With her being sick she has fallen behind a little bit with Therapy. She doesn’t seem to want to lift her head up much. Our girl found her a new favorite show. She LOVES bluey. She also got a new chair for Christmas and she lovessss it as well. Fits her better than her other chair.

I don’t really have any other news for her. She is doing very well. She hasn’t had too many seizures. We have been on a roller coaster to get her meds, they switched one of her seizure meds. Not really switched but switch led the generic type, I guess you would say. She has been doing better with that! I think in the past month she has had maybe 2 or 3 and they haven’t been really bad. She is 100% tube fed, I would love to see her go back to being fed by mouth but with all this sickness around she just isn’t feeling it.
Her next appointment is at the end of January with cardio sso I will update that and see what he thinks about her heart surgery.

I hope everyone has a great new year! STAY SAFE!

11/30/2022

Hey everyone!! So we got a call from the cleft clinic and they are going to do surgery for Lylahs Lip!!! It’s not the whole mouth yet, but this is a step in the right direction. I truly believe that fixing her lip will get her to like eating foods more instead of just formula! Her surgery will be in March!

She has also had some therapies, we have had to cancel a lot of them because Lylah is just keeping a cough and congested. They said she is doing great. They want us to keep doing tummy time. She is not a fan, and she makes it known.

Our Ly girl is so happy, she smiles all the time, laughs. She loves it when her brother or sister get in trouble. She loves when you clap and make silly noises, and she loves feeding time!!

11/11/2022

So, update on Ly girl. Not much has been going on. We have had to increase seizure meds, she likes to spice up life a little bit. she also stays congested or sick being it’s that time of year. We are steady suctioning her everyday and through the night.

She did have an appointment with her GI doctor and nutritionist. They said she is chunky and looks soooo good and to keep doing what we are doing. They put her on a multivitamin to make sure she is ggetting everything she needs.

Also, that picture was drawn by her older sister, Reagan. She had an assignment in art class for school to draw a picture of someone who inspires you and she chose Lylah. She did sooo good. I’m so in love with it!

Thank you to everyone that has been sticking around and learning more about Lylah. Your support means so much! Our girl is so strong and has overcome so much already! Her being here with us is a blessing in its own.

11/05/2022

11/05/2022

This auntie wanted to show sweet lylah Halloween pictures
A candy corn on actual Halloween (sleeping beauty) outfit was homemade by her mammie (julie)
And a cute very mad deer for the camp ground Halloween ps she really hated the headband for the antlers and being outside!! 💗💗

10/13/2022

So we went out and did a thing. We switched Lylah to a big girl car seat!! This revolving seat is what dreams are made of. I don’t have to be all awkward leaning in the car. It transitions to a booster as well for forward facing. When Lylah gets bigger if she can’t climb in herself it’s going to make life just that much simpler. Always looking to simplify Lylahs life and just make everything easier!

We also got her a nice little shopping cart cover. It is straps to hold her in, we are still trying to perfect that situation!! Picture in the comments!!

10/05/2022

Hey guys!! I just wanted to let everyone know what’s going on. Lylahs seizures have slowed down a lot. She did have a cluster the other day, but she made it through like a champ!!

We went to her Cleft clinic appointment and basically he said there needs to be a good reason to put her through all of the surgeries, and if she is isn’t eating real food or trying to talk then there is no physical reason to do the surgery. I explained to him that I felt she needed it to be able to do some of those things, like eating off a spoon. Who can eat off a spoon with no lip? WHO CAN SAY BABABABA WITH NO LIP??? He said he was going to reach out to her other doctors to see how they felt about the surgery and I have yet to hear back so fingers crossed.

Her genetics appointment I was so excited about got cancelled due to the geneticist being sick, that will be next week. Her primary doctor said she is looking good. He also said he would help in anyway he could with the plastic surgeon doing her cleft surgery.

Lylah is being her typica self, laughing and smiling. She has started interacting with us. She actually will smile and laugh when you make a noise or play with her. Overall she is doing great. Always going up and not falling behind. We are on Lylah time. 💕

09/16/2022

Hey everyone! I’m so sorry I’m awful at posting, we have been VERY busy. We took a vacation to the beach and ummm, this is how she felt about that!! She didn’t like it at all. She did like the beach house though.

Just an update on her health, we got the electric suction for her and it makes life so much easier. She has been having some seizures we spoke with the neurologist and she said that we are just going to have to come to terms with her baseline being a couple seizures a week. They aren’t horrible ones, but any seizures are no fun. She had some ‼️important‼️ Appointments coming up. We go see the cleft team next week and then we get to also speak to her genetics team as well next week.

I can’t believe our girl it turning One this Monday, she came into this world throwing us all a curveball, staying strong and fighting through it all! I hope you all have a good weekend and I’ll update after all of her appointments!!

08/28/2022

Our sweet girl got a new chair! Thanks to her wonderful occupational therapist and physical therapist. She loves it!! We have had so many issues trying to find her a chair that can accommodate her. She can hold her head up but not fully so she needs that kind of support but she also needs to be able to reach the tray. With this chair she can reach her tray AND it reclines back for a little extra head support when she gets tired. It’s a game changer for sure!! She is also exploring her toys a little more now! Using those little fingers! She had a developmental appointment last week and on paper she has checked off all of the 3 month milestones. So now we are working on some 3-6 month stuff! Smart girl will get it in no time!!

Also, look at our girl smiling in this video! And excuse my voice!