It's been a while since I've posted as life has been busy and filled with its usual level of confusion and chaos! We've been trying to figure out what lies ahead for both babies and don't really have a lot of answers yet so I've been waiting to write until I have a worthy update! But then I figure people are interested and praying so I'd write just to say we're doing well, dealing with some big decisions and just generally enjoying life with the babies.
I realized today that in January Max and Addison both slept at home every night of the month- no hospitalizations! And that the only other month that has been true in their life was September. So I decided that was certainly something to celebrate. We had a crisis free month and feel blessed that on top of staying stable with all their big medical issues, Max and Addie are just staying cold and flu free this winter and feeling good. I said something to our Dr S one day a few weeks ago that it'd been a while since we had gotten good news and she told me that every day that Addie does well on Hemo and there are no complications is good news. And this is certainly true. Addie had a great month on hemo, needed no blood transfusions and has been the happiest she has ever been.
Another huge praise I forgot to write about was that we had Addie's hearing retested and she has been re-diagnosed with only mild hearing loss. It's interesting to think about why things happen and I remember the utter devastation I felt the day of their surgery when they told me they had likely profound hearing loss. I wonder sometimes why I had to go through that when it turns out they do not have profound hearing loss. Of course I don't have all the answers but I do know that it floods my heart with joy every time Addie turns to her name, every time she startles when Lucy barks and every time she imitates her Dad's laugh. I smile probably 20 times a day just at the blessing of their hearing. It has taught me to appreciate something that perhaps otherwise I would have taken for granted. It has also taught me that the future is not certain and that I should hold on to hope even in the face of difficult news. And that is a lesson that is particularly important for me as we stand at the beginning of our journey to understanding Max's neurological problems and look at the road ahead. We value medical opinions and outlooks but we also know they are not set in stone.
We have ordered hearing aids for Addie which should be in in a couple of weeks. Mild hearing loss will delay her speech development (perhaps the reason why she refuses to say anything other than 'Dada' despite our many attempts to teach her mama, nana and papa?!) so they should help her. The audiologist said the prognosis for Addie's speech is very good and that she should develop completely normal speech with a hearing aid and predicts no need for cochlear implants. We hope the same is true for Max. We have not been able to repeat his hearing test yet and his neurological problems make it more difficult to predict how his speech will develop. But the encouraging news regarding Addie's hearing gives us lots of hope for him as well. Addie also got her cute glasses last week. I was worried they would make me sad but I was all smiles seeing them on her. She was precious in them. Certain things feel like reminders of all their medical problems- like feeding tubes. Feeding tubes do make me sad. So I worried her glasses would be like that. But they don't make her look sick, they just make her look adorable. And grown up. She's looking more like a toddler and less like a baby every day.
In terms of dialysis and transplant and all things kidney, we are in a stage where a lot of difficult decisions need to be made and we don't have all the information we'd like to be making all these decisions. We're trying to move forward with an out of state transplant for Addie and hopeful for a summer transplant in Atlanta for her but it is currently out of our hands and in the paperwork and insurance stage so we're just praying every day that it will work out. In the meantime, we need to be deciding if we want to try to put Addie back on her home machine or keep her on Hemo. Hemo is awesome for her quality of life. She has gone from 17 hours of dialysis 7 days a week to 3 hours of dialysis 5 days a week- she's loving the freedom and her development is progressing as a result. But hemo means BIG risks and knowing that a blood infection or serious blood loss or a seizure or any number of unpleasant things could suddenly and swiftly happen and put her at great danger. Her machine may not even work and she could end up with fluid in chest again. But if it did, she'd be safer on it. So it's a difficult decision and one we are praying very carefully about. Because we so want a transplant for her and are so frustrated that hasn't been able to happen at our hospital, we are struggling to be happy with any other plan. For right now, she will stay on Hemo for a while longer but we keep praying for wisdom and guidance in making that decision.
The situation with Max is equally complex. We have been very happy with him on his home machine but he has now developed a hernia which is basically a tear that causes fluid to push into places it is not meant to (in Max's case, his scrotum). It is painful, especially on higher fluid volumes. To ease his discomfort and risk for damage, we've had to lower his volumes and increase his time on the machine so he is currently on his machine 21 hours a day which is just so sad. He also has been struggling a lot with his reflux and vomiting and he have a had a couple of scary choking on vomit issues the past couple of months. We have been looking at surgery to repair the hernia and to have a procedure called a fundo that would eliminate vomiting and reflux for him. But, it would involve putting Max on Hemo for about 6 weeks and because of Max's airway and neurological issues, Hemo would be even riskier for him than it is for Addie. We'll be meeting with Max's doctors soon and doing lots of thinking and praying about the best plan for him. We realize that as complicated as things have been with trying to arrange a transplant and debating hemo and PD for Addie, they will only be exponentially more complicated for Max because of his other health concerns. So for now, we're just looking one step ahead and trying to decide what to do about his hernia and reflux.
I find it difficult that there are so few clear answers at the stage we are at right now. And I'm grateful that our doctors value our opinions and inputs. But it also feels like a lot of pressure. I am very worried about making the wrong choice or making a choice and feeling very guilty if something ends up going wrong. I suppose that really that is one of the fundamental difficulties of parenting- how do you know what is best for your child and how do you live with the decisions you make. The stakes are high for us when we are faced with life or death consequences but the fundamental issue is common to all parents. And so we do what anyone else does... we pray, we talk, we make little pro/con lists, we google things, we ask for advice... and finally we make a decision and trust God with the outcome.
So anyway, that is our life at the moment. It's stressful but it's good. The babies are doing well and we're enjoying them very much. I took Addie to church yesterday for the first time and she was so delightful! Perhaps a little too delightful as she talked, laughed and blew raspberries through the very serious prayer time! We thank God for their smiles and their happiness and for their precious lives.