Theo's 19 Months Old

Theo is 19 months old! That means it’s time for an update! 

[A boy and his paci]

[Watching Planet Earth instead of his light board] 


[Our Vision Therapist said it's common for kids with visual impairments use their feet to explore]

[Josh can always make him laugh!]

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I asked our wonderful Developmental Therapist, Kelly, if she could recommended a good babysitter to us. She immediately told me about her coworker, Sam, who was great with kids. I got in contact with Sam and had her come over and watch Theo for a few hours while Josh and I went to Crusade Burger Bar for date night (February 9th). 

When we first arrived at the restaurant we were told it would be a two hour wait. I wasn't worried AT ALL since right before we got there Sam had sent us a video of Theo laughing!

Dinner was delicious, but not worth the two hour wait. However, their appetizers, drinks, and dessert were very tasty!



The next weekend we had Sam come back again to babysit while Josh and I went to see Sir Elton John (February 16th)!

February 20th was a very important date for us! Our Sleep Number bed was delivered! Yay! But more importantly, baby Mckenna was born! I have a niece! Congrats to Luke and Andie! I’m so excited to meet her next month!

 On February 25th Theo and I drove down to Peoria to meet with Dr. Steve, Theo's Ophthalmologist. 

When we arrived at the appointment we were taken to an exam room by a technician. I told her that you had noticed that Theo’s visual reactions were not consistent in his left eye. She had me hold him in my lap and used her light during her exam. She said that she was able to get reactions out of his right and left eyes. I told her that our Vision Therapist did her exam while he was laying down, so maybe that made the difference. They then put the drops in and after Theo’s eyes dilated, Dr. Steve came in to see us. I filled him in on what had been happening since our last appointment. He then looked at Theo’s eyes and said they both look really good. He didn’t see any issues with the optic nerve or anything else. I asked him about Theo’s left eye and if we should do patch work since it appeared to be a little weaker. He said, “No, not right now.” He told me that Theo’s brain is continuing to recover from all the surgeries and we should give it a chance to do that before we try patching. He said to continue to work hard, stimulate him, and go to therapy. We then made an appointment to see him in six months. I also asked about the CVI. Dr Steve said he doesn’t like to diagnose kids this young. So he wants to wait on that.

On February 27th we moved Theo a queen bed from his pack-n-play. He rolls over a lot during the night and had been getting stuck in awkward positions in the small pack-n-play. He seems to be adjusting well! I think it has to do with his Star Wars sheets! I am in the process of decorating his room (thank you Pottery Barn Kids!) so I will post more pictures when I am done!

We were supposed to see Genetics, Neurology, and Pediatric General Surgery in Peoria on March 7th, but a week before the appointment Genetics called and canceled. They are going to re-run Theo’s genetic test (exome sequencing) since they didn’t find anything last year. They are canceling his appointment and they will reschedule once they get the results back (2-3 months). Makes sense. There’s no point in meeting with the doctors if there is nothing to discuss. 

On March 7th Theo and I headed back to Peoria to meet with Pediatric General Surgery and Neurology.

Since the hospital is two hours away I like to drive down early, so I can feed Theo and then walk around the hospital for an hour (while Theo's food digest). That way he is ready for his appointments.

While we were pacing the halls we ran into Jessica (APN with Interventional Radiology). We haven’t seen her since November. She says she can see that Theo is improving and she’s proud of all the effort we are putting into his recovery. We will see IR in October for a follow up angiogram.

Next, we went to Pediatric Surgery. The doctor said his G Tube looks good even through there is some granulation. They showed me how to replace the button and then gave me an “emergency kit” just in case the button ever falls out! If I can replace an NG tube then a G Tube will be cake! We will see them for a follow up in three months.

[Granulated tissue]

[Lotion to help with the granulated tissue] 

["Emergency Kit"]

We then saw Neurology. We talked about Theo’s abnormal EEG, which is due to his “slower right side with infrequent spikes.” He told me that most of Theo’s damage is on his right side (“thinner cortex”), which is why the left side of his body is weaker than the right. These infrequent spikes mean that Theo is more likely to have seizures. Dr Avula wants to wean Theo slowly off of his Phenobarbital and if he doesn’t have any issues then in a year we will wean him off of the Keppra. I asked him how bad the damage was to his right side and if kids can recover from that. He said that he believes Theo will continue to develop, but it will be on his own time. He is going to talk to Neurosurgery about doing another MRI in about six months. He doesn’t see the need to do another EEG unless Theo has a seizure. Dr Avula mentioned how much healthier Theo looks! He should! He’s grown another inch and gained another pound over these last two weeks!

Theo continues to do well during all of his various therapy appointments. Right now he is having a hard time letting people touch his hands. We are working on positive touch and stimulation, but I honestly think he's so possessive because he wants to make sure he can get his Paci if he needs it. Theo is still struggling to hold his head up, but we are getting back into tummy time and some other exercises, so hopefully that'll help. He still won't take any food by mouth and hates it when anything (other than his hands or his Paci) are any where near his mouth.

[Theo laughing]

[Working with prunes]

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[Working on holding different shapes]

[Theo working with different textures]

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[I started mixing this with Theo's formula. It is higher calorie and is made from real food. If he tolerates it then we will talk to the Dietitian and GI Specialist about switching him to this exclusively]

[ICE STORMS!] 

[Tummy time]

[Working on getting Theo to roll to his right]

[PT]

[More tummy time with Woody!] 

[Working with different textures] 

[Theo was so tired that he fell asleep DURING his Feeding Therapy!] 

[Curls!] 

 

[Using a switch to activate his toy]

Josh is currently working (and living) up in Galena, IL. This job will hold him over until his Chief job down here starts in April *fingers crossed*

We miss him like crazy, but I appreciate him continuing to work so we can keep our health insurance.



We try and FaceTime with Brodee as much as possible. That kid is growing up so fast!

When Theo is napping I am usually in the basement working out. I got my little gym all set up and I even made a calendar with some goals. It's frustrating when you exercise daily and eat healthy and you can't lose weight. Ugh. Story of my freakin' life!

[I got an Apple Watch!]

  

I just want to thank everyone for your love, support, and continued prayers. We have faith that Theo will continue to progress and get healthier!