Fused Kidneys and a Beautiful Heart!

My apologies for my lack in posting recently! I think all of the stress of the last year finally caught up with me and on top of being overwhelmed by appointments I managed to catch the dreaded "crud" along with Abram last week!

February and March were incredibly busy months with doctor's appointments, speciality clinics, therapies and working hard on walking with Abe. After we got the news of our son's rare genetic disorder on New Years Eve, we have basically been running the gamut of specialists to rule out the common things that go with the Chromosome deletion he has. 

We were VERY lucky to hear that Abram's heart it "beautiful"!! He has no murmurs or abnormalities so when the Pediatric Cardiologist walked in and said "good news" after his EKG and Echocardiogram, my eyes filled with tears and every hair stood up on my arms. That moment was honestly the first time we've heard GOOD news from a doctor since Abram was born and for that - we are so thankful!!

In March we also found out through a renal sonogram (requested by our Geneticist) that Abram has fused kidneys. They are apparently one large organ and pushed over to one side. For now, we have no idea what that means for Abram but since he has not had any issues wetting diapers, I refused to let myself read or research anything about it. We got to see the Nephrologist (the kidney doc) this Friday where Abe will have to get another renal sonogram after which we will get to see the specialist. I am nervous to see how that will turn out but I am trying to keep calm and focus on the things I CAN do something about right now!

Abram also got his new glasses with the correct prescription and he has done so well with wearing them and keeping them on. You can tell that they really do help him and make a huge difference so I must say I am impressed with the Wolfe Eye Clinic! They made dilating Abram's eyes seem like a piece of cake and we were in and out of there in under two hours. I even think the glasses are helping immensely with Abram's mobility as well since he can see where he's going! He is now "cruising" on furniture and walls, wants to constantly walk holding mommy's fingers so tight that my fingertips turn purple and he loves his new push-behind toy that I managed to score for $8 at a Flea Market! (It's a nice ALL wood one that will be sweet with my intended makeover).

The next BIG thing after our Nephrologist appointment will be Abram's MRI to check the mass in his brain for growth. I am SO nervous about that but we have to take things one appointment at a time and one day at a time. I know I am well educated about all of my son's medical issues and all I can do now is hope that it hasn't grown.

I also have some exciting news regarding Abram's healthcare. We were booted off Medicaid on Abram's first birthday) the same day we were talking to a Skull Base Surgeon about brain surgery for our child. We made "too much" money on their scale but we did manage to qualify for Hawki. That has helped immensely but it hasn't covered everything so we have really dwindled our savings down paying out-of-pocket for things for Abram's medical expenses/necessities. We heard about the Disability Waiver and the Intellecutal Disability Waiver last summer after all of Abe's diagnoses and I immediately applied. He qualified for disability but the wait list for help is 18 months long and after two REALLY long years raising a special needs kid without a great support system has been difficult at best. After supplying an encyclopedia of information to DHS and a meeting with a psychiatrist, Abram qualified for the ID Waiver so we now officially have a case worker, Abe has his Title 19 back which will help immensely with medical expenses, we got our WIC back and we now qualify for Respite Care and Supported Community Living, which means we will finally have the ability to take a break every now and then!

Hop

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