Hello all. 

We have been getting situated in our new home over the last six weeks so it has been awhile since an update. Move went really well and the kids seem to really be comfortable here in Albertville.

I never really know how to update people anymore just because there is so much but yet nothing major. You start to wonder, do people even care? Is this journal just for me to write my thoughts down so I don't lose my mind? Anyways, I will go in to detail what we are working on with Harrison because I want to be open with people and not shut down. I don't want to feel alone. It really helps me when people ask - How is Harrison doing with his "four point sitting" or "how is his swallowing therapy going" because sometimes when people ask, How is Harrison? I don't know what to say? 

The last two months we have been working on getting him connected with all his specialists here in Minnesota at Children's Hospital Masonic - neurology, gastroenterology (GI), speech, occupational therapy, physical therapy, ear nose throat (ENT), eye doctor, and urology... PHEW! gross. ha. 

We are currently in an extensive 12 week therapy regimen for speech. This requires 2 therapy sessions a week just for NMES (vital swim). They put electrodes on his throat and as he eats food, it zaps his little muscles in hopes that they will get stronger. Harrison has had a poor swallow since birth (hence the gtube in his tummy). 2 therapies just for speech is a lot on top of his already PT and OT outpatient as well as in home therapies, and just regular doctor specialist check ups that are usually twice a month. I often find myself in a funk... my life is scheduled around doctor appointments. I try to stay positive the best I can, but sometimes I just need to admit to myself that this sucks. It sucks that I can't take Grace to the library as much or have just regular time with both of them at the park in the mornings. It sucks that I can't say yes to play dates. I really pray that my mom friends won't stop asking me...because I've heard that eventually us 'special moms' get left out. Am i fulfilling this by even typing it out? I hope not. I am trying to make myself aware of the stereotypes of being a mom with a kiddo with a lot of needs and also balancing that some of this stress is just having TWO KIDS that are little. So to my mama friends, keep asking me. I will try to make something work :-)

Harrison is also working on standing right now and so we have a stander device at home to strap him in. Before we can put him in his stander we have to put his braces on. He also has a gait trainer/walker for practicing taking steps in. It is VERY slow moving. Some days I can see that he will be a walker and other days, I mentally prepare that our house needs to be wheel chair accessible. So many unknowns. And yet, all in the same breath..Harrison is rolling by himself now and pushing up with his legs a lot more! It is so cool to see him moving more. 

Harrison got an episode of pneumonia at home here after about 3 weeks approval to have him sit up and drink with a little bit of thickened liquids. We were able to treat it at home but it was about 4 days of straight crying for him and I don't handle that the best. I don't think anyone would... Counting our blessing that we did not have our first hospital stay because of it! I am asking specific prayer for Harrisons lungs. Please please pray for his throat muscles and lungs to stay healthy. We are trying so many different oral liquids/feedings with him and sometimes I can't tell if its safe for him because he is coughing and what not. One therapist will tell me, he's fine, and the other tells me to give him more breaks. Coughing is good, no coughing is bad. So I have major mom guilt and often just want to tube feed him to keep him safe. In return, he can't practice his oral skills if its just going down his tube? Anyways, he is making eating improvements but it is very very very slow and takes a lot of patience.

Stomach wise, Harrison has been more constipated and really needs a new nutrition plan. If any of us are constipated, we don't eat as much. So..with Harrison's swallow issues, its hard to tell if its skill issue or just "I'm constipated and don't want that". Pray for us to figure out a healthier option for milk. He takes pediasure with fiber and I know long term, this is not the healthiest option. 

Last prayer request is for Alex and I. We are going through grief counseling and starting a specific treatment where we relive the most painful events during Harrisons first year of life. Hospital PTSD. A counselor is leading it. It will not be fun. I sometimes wonder when I'll stop feeling the pain i do as a mom. I've been told it never goes away but it may get easier to carry. I see so many little boys Harrison's age running around and playing and so when I hold my son in my arms.. it does get to me. I just love the normal development of a child. The joys in hearing the first words, the walking, the talking. Harrison doesn't have that now..but he may some day. They will be so much more special if and when they do happen.

Alex and I are so thankful to be home in Minnesota. We have a lot of supportive family members that cover us with love and make us not worry so much. The load is lighter when you have family to help carry it with. Also, Big sister Gracie is doing so so well adjusting to her new home. She is almost fully potty trained and has so many friends. She is so social and is always wanting to play outside with all the neighbor kids. She will start preschool in September, school bus and all!! woo hoo!

Much love,

A&K&G&H :-)