Appointments for the kids have kept us on the run already this week. But thought I would just share a brief update on how things are going.
Maia - She saw the developmental pediatrician yesterday. Her evaluation was not unexpected, but still a bit sobering to hear. Dr. S last saw Maia earlier this year and was so pleased with how well she was doing. Her sadness over Maia's illness and loss of function was evident. She confirmed that Maia is functioning at around the 9-10 month old level. She's pleased with how far Maia has come since leaving the hospital, but isn't making any predictions about how much function Maia will regain. Dr. S plans to see Maia again in four months.
Maia also saw Dr. D, the neurosurgeon yesterday afternoon. The surgical incisions have finally, almost healed. He is satisfied with her progress. We've been a bit concerned because Maia seems to be a bit more unsteady over the past week and not quite as strong. If we don't notice improvement over the next couple of weeks, she will have a short MRI just to make sure there are no issues with her shunt.
Today, Maia saw her regular pediatrician. We had requested the appointment because of the unsteadiness and feeling like Maia just hasn't been quite herself. She has been fighting a cold and Dr. A saw fluid behind her eardrums. Nothing concerning for infections, but it could certainly be affecting her balance. We also met with a county social worker to see if there are any services that Maia might be eligible for and benefit from. Unfortunately, I think we may be in that "donut hole" of making too much to qualify for most services, but not enough that we can afford them on our own. Lots of paperwork to fill out, then wait to hear their determination.
Tomorrow, she will have therapy as usual and next week, some urology testing and appointments.
Matthew - He's been struggling a bit lately. I don't feel comfortable sharing a great deal at this point, but we are concerned that he may have some attachment issues. Given his "pre-Hansen" years, it certainly is understandable. Last week, I received an email from an adoptive mom who met both of our kiddos when she was adopting from their orphanage. This was a few months before Maia's adoption. She confirmed something I had suspected from the moment I met Matthew. Again, I don't want to get too specific, but bottom line... Maia was the darling of the orphanage, Matthew was not. When I think about what both my children have endured in their short lives... oh, my heart breaks. Anyway, we are doing everything we can to help Matthew heal the emotional scars and learn what healthy relationships are all about.
Because I was concerned about some of the behaviors that Mark and I have been seeing, I asked to meet with Matthew's pre-school teachers - just to see how he was doing socializing with the other kids and how he was doing from a learning standpoint. I'm so glad that I did. It was wonderful to hear that Matthew is doing well at school. They are not seeing any of the behaviors that we are seeing at home and tell me that they enjoy having him in their classrooms. He is making progress in his language skills and can write part of his name "Matth" (working on the rest of it)! I can not even begin to express how much it means to me that his teachers are so committed to Matthew. I've said this before with Maia and it is only reinforced - we are blessed beyond compare with the teachers working with our kiddos - they are AWESOME!!
And that's what's happening with the kids. Matthew is looking forward to Halloween tomorrow and I will try to post pictures of trick-or-treating later in the day.
Our time here in Duluth is coming to an end. It has been a wonderful, much needed get-a-way for Mark and me. Last night, we walked to a restaurant just down the street. Enjoyed a couple of adult beverages and relaxed. Even though we try to get out every now and then at home, we sometimes still carry all the daily stresses with us. On this trip, we've been able to leave that behind for the most part. Hopefully, it will allow us to return home tomorrow feeling little bit renewed.
Mark got the floor installed as planned and we will stop at the cabin tomorrow morning to pick up the trailer before heading home. I'm excited to see how things look! The conference has been good and I learned a lot about dermatological conditions.
And on a very cool note, I met a man who will be leaving for Ukraine very soon (next week, I think). He and his wife are adopting a little girl through Reece's Rainbow! Isn't it fun to see God make connections like that?
Although I have enjoyed our time away, I have to admit that I am eager to see our kiddos again. They could not be in better hands right now, but I still am ready to hear their giggles and look at those precious faces. I'm thankful today that the kids have been loved on by their grandparents, thankful for my hubby, and thankful for the many blessings that God has given me.
I was too tired and yes, a tad lazy to post last night but I do have a huge amount of gratitude for Mark's and my parents right now.
Matthew is enjoying time with Grandmama and Grandpa Jerry (and Suki). Maia is being spoiled by Nana and Papa. Mark and I are spending a few days up north. I'm attending a Dermatology conference and the location is such that Mark is going to be working at our cabin during the day. Now that Maia is more mobile, we need more than just the plywood floor down so she doesn't get slivers. We had bought flooring several years ago, but had not installed it (somehow we've been a bit busy - lol). That's Mark's project for the next couple days. And we get the opportunity for some couple time which is a rare luxury these days.
OK for the people laughing at the cardboard and pizza. PAPA MURPHY's does this and I thought it was a new thing that pizza cooking was going to. That is the best excuse I can come up with right now. When I think of a better one I will post it.
On Friday evening, Mark put a frozen pizza in the oven. A few minutes later, I asked him why it smelled like smoke. He looked at the pizza and said everything was fine. Another few minutes pass and I could still smell something odd. I again ask him if there is anything wrong. Mark says, "Isn't the pizza supposed to be cooked on the cardboard? Oy vey!
I'm glad that Matthew is still unconcerned about what other kids think and that he ran to hug me during group time at the beginning of Sunday school. I'm sure those days won't last forever so I have to enjoy them while I can.
Maia is starting to make a few more sounds. Pretty sure that if she starts talking again, the first word out of her mouth is going to be "NOOOOOO!" She's getting awful close to that word.
Praying for all of you out there who still take time to read our blog. May God feel near to you and may He strengthen you in your moments of weakness. He is capable of infinitely more than we can imagine and He is in your corner!
I'm going to combine two posts together tonight because I'm feeling kind of ok, a lot lazy.
Maia had her EEG on Tuesday morning. Thankfully, they were able to just put the cap on and attach leads to that as opposed to gluing all the leads to her scalp. She was able to sleep for about 20 minutes so they got a good reading. We met with the neuro NP in the afternoon to get results. On the positive side, there were no "spikes and waves." But, that still leaves us with the question of why Maia has lost her speech. The EEG does continue to show frequent abnormal brain activity which predisposes her to seizures - both partial and generalized. However, there was no evidence of seizure activity on the EEG. The results were reviewed by an epileptologist who feels that Maia's brain may just still be recovering from it's severe injury and we need to allow more time. So... We don't really have any more answers, other than to say what is not causing the lack of speech. My daily prayers are that God will give Maia back her words.
As far as my thanks, well it's pretty unimaginative today but I am thankful nonetheless.
Thankful for the opportunity to have lunch with Erica, a church friend, who adopted her son Timothy from the same detsky dom as our kiddos. Was nice to share time together.
Thankful for dinner with my mom on Tuesday evening and then hearing Rabbi Harold Kushner share his perspective on suffering and the book of Job.
Thankful that we had a calm evening without meltdowns.
Thankful for God's promise to be with us in the midst of whatever we are dealing with. He sustains me.
Thankful for opportunities to make a difference in the lives of my patients and their families.
Yes... I am still alive for those of you who might still be hanging around wondering. When I paused to take a peek at the blog, I realized how long it had actually been. UGH! So, here I am... ready to get back in to the routine of updating. I love having people read the blog, but it's also kind of my journal of parenting and where the kids are at, too. So, I really do need to stay on track - lol!
We've just been doing life over the past couple weeks. The kids have been busy with school and doing well. I'm thinking about making an appointment to visit with Matthew's teachers, just to see how he's adjusting to the school routine. In some ways, I can see that school is good for him. In other ways... well, I can see some of the negative behaviors he's picking up from other kids. I don't have a sense of how he is interacting with his peers so that's one of the things I really want to find out about. Although Matthew's speech has come a long way, I do worry that his difficulty with language may affect the ability to develop friendships. There are a few more weeks of swim class which Matthew really enjoys. He gets to work 1:1 with a volunteer. Last week, they started practicing "diving" for rings in shallow water.
Maia is doing well. She's walking (albeit a bit unsteady yet) around the upstairs of our house on her own. She's been busy with appointments, therapy, school. If you think of it, please say a prayer for our girl tomorrow (Tuesday). She is having an EEG in the morning. When she was hospitalized, the two EEGs that were performed showed abnormal brain activity called "peaks and waves." These can affect the ability to speak. So, the epileptologist (seizure specialist) wants to see if these are still present and the reason that Maia has not regained any speech or verbalization yet. If there are still peaks and waves on the EEG, they may recommend medication to depress them and see if it improves her communication. Problem is that the medication would likely be Valium or something similar. I am not thrilled about this idea, but I guess if it helped Miss Maia to communicate again, then it would be worth it.
Last weekend, we attended a workshop in the cities called Beyond Consequences. It is for parents, caregivers, professionals who live with/care for traumatized kids. Mark and I both found it helpful. The presenter is an adotive mother of 2 children from Russia and social worker. One of the concepts is that brains do not develop normally in kids who come from backgrounds of abuse, neglect, and trauma. They live in a constant state of stress and fear - choosing to either act out or shut down. Much of the philosophy depends on us as parents changing our perceptions and approach. I am being challenged for sure!
I am guessing that every parent feels this way at one time or another, but parenting is such a humbling experience. As with so much in my life, it reinforces my need for God and my dependence on Him for wisdom, patience, and understanding. Somehow, he saw Mark and I as worthy to parent Matthew and Maia so I have to trust that He will equip us with what we need to do so.
I'll get a couple of cute pics of the kids posted soon and try to share more of what's happening here. Happy Monday!!
Today I am glad Matthew does not know how to call the police. Last night he said he was mad at me when I told him to brush his teeth. Then he said he wanted to call the police and have me put in jail, so I gave him the phone. He pushed about 30 numbers and then asked me to call the police so he could put me in jail. I think I would be the first dad in jail for teeth brushing.
The day's almost over and I meant to get this post completed before I even really started my day. Somehow... that just didn't happen. But, I can't let Thursday leave without mentioning a couple of things I am so thankful for today.
Yesterday I came up the stairs after getting home from work. Matthew was hiding from me (one of our favorite games) and Maia was in the living room. I walked in and said "Hi, baby girl." She got the most beautiful smile on her face, crawled over to the couch and PULLED HERSELF UP TO A STANDING POSITION!! Did you hear me cheering her on? YAY MAIA!
Usually, the kids are up when I leave for work in the morning so I am able to say "good-bye" to them. Yesterday was no exception. They were both in our bedroom with Mark. I told them all to have a good day and walked downstairs to leave. Matthew came running after me yelling, "Wait mom! I have a dea (idea)." I stopped as he ran down the stairs. His idea? "Mom, I give you hug and kiss!" Oh Matthew... I think that was the BEST IDEA EVER!!
So thankful for my sweet hubby who handles the whole morning routine a few days a week so that I can attempt to get back into the habit of going to the gym before work. And he does this without complaining. Love you Mark!
Tonight, I am especially thankful that God somehow found me worthy to be mom to these two precious treasures that he has entrusted us with and to be the wife of this man who tolerates me in spite of my many faults!!