Referrals and appointments

As I was changing our calendar to December, I realized the boys have so many appointments! Three for Cooper and five for Wyatt. Cooper has a hemangioma on his arm. Wyatt has a cranial helmet and they both have a cows milk protein/soy and possibly egg allergy. Luckily all are temporary (hopefully)!

•Cooper’s hemangioma

April 28 – June 25

When Cooper was born we had no idea he’d end up with a huge red blob on his cute arm. As the weeks went on after birth I saw what looked like a tiny red dot. I thought maybe at the hospital he got a shot in his arm that I forgot about and the mark was still there.

During one of the boys first telehealth appointments I asked the NP what it was. She suggested it was likely a hemangioma and left it up to us to decide if we wanted a referral to the dermatologist. Knowing our insurance likely would cover it and I’m anxious about everything, I said yes. She didn’t seem concerned though.

Due to Covid and a lack of enthusiasm from the NP we did not get an appointment with the dermatologist for months.

Once we finally saw the doctor, who is amazing by the way, we were left with the worst case scenario option. If we were referred right away, Cooper may have just needed an oil we’d drop on the spot twice a day. The second option would be a steroid injection. Both options had minimal to no side effects.

Not our luck. Cooper needed to be put on Propranlol. It’s a blood pressure medication but has amazing results for infant hemangiomas! He needed to get an EKG for a baseline and then start at a low dose of the medication. We go back monthly to check his weight, the progress and get an updated dosage. He had a second EKG after a month to make sure his heart was still tolerating the medication.

We give the medicine twice a day in a separate small bottle to make sure he actually drinks it. The meds have to be given at least 9 hours apart AND until he was 6 months old we had to wake him in the middle of the night for a feed. He couldn’t go longer than 6 hours without a bottle due to the risk of his blood sugar dropping from the medicine. It wasn’t an ounce of food to tie him over like the doctor said we could do. He wanted a full feed, which meant also waking Wyatt for a feed. So until 6 months old both boys even though they wanted to sleep through the night, needed to be woken. It was life changing when we were given the okay to let him sleep!

His hemangioma has definitely gotten better. The doctor was concerned in the beginning about it bursting because it had gotten so large. The spot doesn’t bother Cooper but we are worried Wyatt may grab his arm and pull on it. Also, when they were younger and kind of still now, it’s been one of the only ways we can tell them apart 🤣

We are hopeful as the medication dosage goes up it will significantly get smaller. It’s suppose to completely go away but we’ll see. Our next appointment is this month, the doctor said he can get the steroid injection which should flatten it out! Stay stunned for the final results. He should only be on the medication until 1yo. He’s currently 8 months!

Wyatt’s cranial helmet

When the boys were in my belly they each had their own side. They practically stayed head down the entire pregnancy with an exception to Wild Wyatt trying to squirm and fit in places he did not fit.

When they were born each continued to sleep/lay in the same position as they were in my belly. This meant they started getting small flat spots on opposite sides of their head. The side they were each laying on in my belly. I thought maybe we were neglecting the boys and that’s why they got the spots. I had mom guilt of not holding them enough and felt I was failing them.

The pediatrician decided to refer us to a physical therapist. It was determined they had Torticollis, common in multiples. A rare condition in which the neck muscles contract, causing the head to twist to one side.

So no it was not because I didn’t hold them enough. It was inevitable because of their neck muscles and lack of space in my belly. Thank goodness!

We were given specific exercises to do multiple times a day. We got rid of their swings and solely did floor play. I contribute this to their very early rolling, 2 months old (1 month adjusted) and early crawling, 6 months (5 months adjusted). We lived on the floor. Constantly doing tummy time with Lily and the dogs and playing with as many toys as we could to keep everyone entertained. The boys no longer sit still. They love tummy time. They love moving and crawling. Wyatt is already standing and walking along things for a month or so now.

We have two appointments a month. They have made tremendous progress. You can no longer tell they favor one side over the other. You can barely tell they have a small flat spot. But we were referred for a consult with Biomedics for a cranial helmet.

Cooper just barely passed the threshold and therefore didn’t need a helmet. Wyatt on the other hand missed the cutoff. The cut off was 8mm and he measured an 11mm. By the time we went to the next appointment to be scanned/measured for the helmet he was down to a 9mm. When we went back to get the helmet on he was an 8mm and when we went back a week later to check the fit he was at 7mm.

Typically they say it takes 3-6 months. It all depends on the child’s growth spurts. It’s what the doctors rely on for the head shape to change in helmet. They didn’t seem to think Wyatt would need it for very long. It’s only until he stops making progress or gets to 0mm (perfectly round baby head).

At this point we go weekly to his appointment to check the fit of the helmet and progress. He wears it for 23 hours a day. When we take the helmet off for the one free hour he gets, he smiles from ear to ear and loves a good head rub. He forgets when it’s off though and wonders why it hurts when he falls and hits his head.

Poor fella should hopefully be done with the helmet before his first birthday! What a great present 🙂

CMP/soy allergy

I spoke about this a bit in a previous post. The day after the boys were born they started pooping blood and mucous. After multiple normal test results the gastroenterologist decided they had a cows milk protein (CMP) and soy allergy. He said it was hard to determine exactly what the allergy was because they were so young.

I stopped nursing and we gave them a dairy/soy free prescription formula. Within two weeks their poop was back to normal. This was exactly what the doctor had predicted would happen.

They were surprised this showed up so soon. They say typically it takes about two weeks before they see a reaction in a child. I swear this was Weston helping us. I would have totally panicked if we were home during this pandemic and they started pooping blood. I’m thankful we discovered it while still at the hospital!

We started solids and I’m stressed out. So far no reactions with any veggies we have given them. The gastroenterologist said we could give food just like we would with our other children. The pediatrician said we would start the milk ladder after their 9 month appointment.

This is when we introduce certain dairy foods. The ones that typically have less of a reaction and we work our way up. I’m nervous but hopeful. We were told kids likely outgrow this allergy by the time they’re 3. They also said it’s better to introduce common allergy foods before age 1. Such as peanut butter. It helps grow the tolerance? I’m not an expert just trying to remember what all the doctors have told us.

Because the doctors are unsure exactly what the allergy is they said to also assume they’re allergic to soy. Among those two allergies, Lily went to an allergist to see if she outgrew her egg allergy. She had but we were told the boys likely would be allergic to eggs for awhile like she was. So for now, we are staying away from the three things and being hopeful they will soon be able to eat anything they want! (besides sugar for my close friends reading this😆)

At a year old the boys will see the gastroenterologist again and we will give him an update on our progress with the ladder. At that point I think the boys can see an allergist and finally get tested if they continue to have reactions.

Praying they have no reaction but if they do hoping it’s not anaphylactic. I have Benadryl on stand by!

Have your kiddos been through any of this!? Any words of encouragement or stories you want to share?

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