Update from Las Vegas

It has been a long time since I have updated the blog, and a lot has happened since Maksim's MRI. Maksim got a bad respiratory virus in April, but he handled it without needing supplemental oxygen or hospitalization! We considered this a big PLUS and are hopeful that it was a sign his lungs are getting stronger. He had one hospitalization in May for dehydration, but other than that, he has remained relatively healthy. Probably the biggest news for our family is that Logan got accepted to graduate school in Las Vegas for the Master's of Medical Health Science degree at Touro University. He received this news the very end of April, and we rented our home in Idaho and moved down here the middle of June. It has been a whirlwind for sure!

Since being here, Maksim has had a few appointments with the Nevada Early Intervention Services. His first appointment was an evaluation for services, where they determined what services they feel would be best for him. The services recommended for Maksim were developmental therapy, nutritional therapy, vision therapy, hearing therapy, physical therapy, occupational therapy, and speech therapy. We have done a few of the evaluations, but we are still waiting to be able to schedule the nutrition therapy, PT, OT, and ST evals.

He had his vision and hearing evaluations this week. I really liked the vision specialist he was given! She seems like she will be able to help us a lot with the struggles we have related to Maksim's vision. She also had a few concerns that were validations to concerns that we have always kind of seen but never really thought of. She recommended getting an acuity rating from his pediatric ophthalmologist, because she believes he is likely legally blind, even with corrective lenses.

We have always known Maksim's vision was limited. I mean, you have to expect that when you know he needs glasses at 5 months corrected. On the other hand, I think we clung to the words of a few too many doctors who told us they were hopeful Maksim would be able to drive and learn in school without assistive aides for vision.

Unfortunately, after doing some research, the term "legally blind" makes so much sense for Maksim. Legal blindness, as defined in the United States, is vision acuity of 20/200 or worse. If looking at a standard Snellen eye chart, a person with 20/200 vision can read the top line/letter from 20 feet away, but is unable to identify letters on any of the subsequent lines. Maksim can't even locate me if I am 20 feet away from him and standing still. He is sometimes able to track some movement, but he cannot locate stationary objects from that distance. From what we can tell, there is no way he would be even close to being able to identify the top line of a Snellen chart.

So, Logan and I are trying to wrap our minds around how this is going to affect Maksim and our family. There are so many uncertainties with raising a special needs child, but vision is really scaring us. Of course, we still have to get the diagnosis from the ophthalmologist, but after researching the definition of legal blindness, it is difficult to imagine that is not the case for Maksim.

At his hearing evaluation, we were told his left tympanic membrane and hair cells have abnormal/decreased movement and response to sound. The audiologist suggested this is likely being caused by fluid behind the ear, but Maksim hasn't had an ear infection in several months. She said it doesn't currently look infected, but fluid can still be there. Because of the delays in speech and language caused by such limited hearing, she suggested an ENT consult for possible ear tubes. We will discuss this option with his new pediatrician at his appointment next week.

Maksim has had a really hard time adjusting to the move. Eating has been even more of a struggle than before. We have been lucky to get him to drink 2 ounces of his high calorie preemie formula when he has his bottles during the day, even when conditions are perfect (in his dark room with no distractions). Sometimes he will drink a little more before bed, but not much, therefore leading to multiple middle of the night feedings, because the poor kid is starving. Maksim is very easily distracted, so he actually tends to eat much better during the night, when he is half asleep, but it is becoming quite exhausting to Logan and myself with his intense school schedule and my 6am work schedule.

I think our biggest struggle with Maksim since the move is just knowing how to help him relax and calm down. He is constantly on the move, and constantly acts irritated and agitated. He gets very worked up, and NOTHING in this world calms him down. He doesn't want held; he doesn't want down; he doesn't want food; he doesn't want his blanket; he doesn't want mom; he doesn't want dad. Nothing soothes him. Taking him in public is impossible, but keeping him home is also discouraging and exhausting because of the same reasons. I just wish there was something I could do for him. I honestly just wish that I could hold him and feel his body and mind relax because he knew he was in his mother's arms. :(

We have witnessed so many miracles on behalf of Maksim, and we know we will see many more. We continue to pray for strength for our family as we learn to adapt and adjust to each new setback. As always, thanks for your continued faith and prayers!

We hope you enjoy some pictures taken during our adventures since moving to Sin City! :)

Las Vegas LDS Temple



Splash park



Discovery museum


4th of July



18 months (I can't believe he finally fits in these onesies from his baby shower)


- Posted by Shalee using BlogPress from my iPad

MRI

Maksim had his brain and cervical MRI along with his hip x-ray this last Saturday. We made an early day trip of it by leaving at 3am and getting home around 2:30 in the afternoon. It was a long day for sure. Thank goodness Maksim slept most of the time in the car! :)

His MRI went well; he handled the sedation extremely well and even kept his oxygen up the whole time. He was the definitely the most peaceful and relaxed we have ever seen him! He was sent home with absolutely no complications or concerns.

The weekend felt like forever as we waited for the phone call from the neurologist on Monday. When she FINALLY called, we were very blessed to learn that the cervical MRI showed the hemangioma had no internal growth on the spine or brainstem; the hip x-ray showed no evidence of hip dysplasia; and the brain MRI results were "normal." When I was speaking with the neurologist, she however, did not hesitate to make an official diagnosis of mild cerebral palsy. She listed all of his current problems, along with much of his history, including being born not breathing, and said she is certain this is what it is. She ordered another MRI to be done after his 2nd birthday, when his brain will be fully myelinated, but wanted to stress that there is a percentage of children with cerebral palsy whose MRI's do not show the evidence.

We still have no idea what this diagnosis will mean for Maks in the long-run. Cerebral palsy is an extremely broad-spectrum diagnosis, ranging from the very mild to the very severe. Although we definitely know that Maksim's case is on the mild end, we don't really know what "normal" will mean for him or what kind of challenges will come up in the future. We are very encouraged, however, by all of his therapists' impressions of him and optimism regarding his progress and potential. Despite the noticeable spasticity, sensory issues, language delays, and gross and fine motor delays, they continue to rave about our Miracle Maks. We are also very confident that early diagnosis and treatment regarding his vision and motor delays have greatly contributed to his progress. We are also thankful for the many doctors, specialists, and therapists we have involved in his care. I'm still not sure how we manage 4 therapy sessions a week with the many other things we have going on, but we will continue to do whatever it takes to help Maksim reach his potential.

This precious boy continues to beat the odds, and we are blessed to have his sweet spirit in our home. Here is a picture of him in the car right after he woke up from the sedation. Poor kid was pretty delirious! :) I also had to add a picture of my princess.






- Posted by Shalee using BlogPress from my iPad

That Scary Diagnosis

Maksim had his first neurology appointment yesterday. It was at Utah Neuro Rehabilitation in Murray, UT. Let me preface this by saying that we are the one who initiated the neuro consult due to concerns of ours, so most of what we were told did not come as a complete shock. We were told that Maksim has sensory processing disorder and spasticity consistent with cerebral palsy. We will have to return to Primary Children’s Hospital in Salt Lake next week for him to have a sedated brain and cervical MRI along with a hip x-ray. Due to his chronic lung disease, they may have to intubate him for the procedure. We are hoping for just the sedation. With the brain MRI, they are wanting to check for the location of cerebral palsy, so treatment and therapy can be more customized to what he needs. He also has a large hemangioma on his neck, so the cervical MRI was ordered to see if it is growing internally and putting pressure on his brain stem or cerebellum. The hip x-ray is to check for hip dysplasia.

Although we were not completely caught off-guard with most of this information, the reality of it all has started to set in, along with the feelings of inadequacy as parents and overwhelming concerns for the future. We definitely have a long road ahead; nonetheless, we are so grateful to be blessed to be the parents to this sweet, smiley, miracle boy, who will undoubtedly continue to astound us.


- Posted using BlogPress from my iPad

More Appointments

This week Maksim has had a few appointments to check some things prior to seeing the neurologist this week. The first one was a repeat hearing test yesterday. At Maksim's last appointment, the pediatrician had a few concerns, such as not consistently responding to his name, not looking to Logan or me when we say "where's mom" or "where's dad," and not being able to mimic sounds such as "mama" and "dada," which warranted this test. I wasn't really sure what to think about the repeat test. I knew he could hear, at least a little bit, because he can be startled. Nonetheless, we went to the appointment just in case.

We were pleased to find out that Maksim's ears work, and the stimulus is being recognized by his brain. He passed all of the tests with flying colors, including turning to quiet sounds in the sound booth. The concern is now with how well his brain is processing the sound and turning it into something understandable to him. He can hear, which is definitely great news, but for some reason, I think a processing problem might scare me more.

His other appointment this week was with a physical therapist. I was really excited for this one, because it meant a fresh set of eyes, who have never seen Maksim, would get to evaluate him and give us a professional opinion.

His overall opinion of Maksim was that it is a "good sign" that he is so active and wanting to be so mobile. He was impressed at his amount of energy and asked "is he always like this? He must sleep well at night!" I thought that was so funny because it is so true! Maksim never stops! :) He also said it was a good thing that Maksim is so happy, because it makes him easier to work with and progress. He watched Maksim army crawl, and stand up, and play with toys. He watched how he struggles to get into a sitting position and how he favors exploring toys on his back or his belly, where he doesn't have to hold himself or toys up against gravity. He stretched and flexed his legs, and watched how he stands on his toes and struggles to make stepping motions. He watched him cruise slightly to the right but be unable to move himself to the left.

He said his main concerns with Maksim lie mostly in his muscle tone. He has an increased tone, particularly in his lower body; he has a hard time isolating antagonistic muscles; and he he has poor balance and core stability. These are all things that Logan and I have noticed and worried about, and they all contribute to his inability to sit and play for longer than several seconds, his inability to four-point crawl, and his limited ability to make stepping motions. However, he said he is very optimistic that Maksim will walk, particularly due to the fact that Maks wants to be mobile, but he has no idea of whether or not he will need assistive devices to walk safely. Maksim's poor vision is another set back in this area, because it frequently causes poor depth perception, which can lead to falls and injuries.

Anyway, I could go on about the visit, but that was the gist of it. I must say, it was nice to hear someone talk about my son through eyes that see him more closely to how Logan and I see him, not as being flawed, but as having a few real struggles that make him different from other children, and not "just behind" them. I can't tell you how many well-meaning people have told me lately that "Maksim is fine"; that I am "just creating problems" in my mind; or that he is "just behind." As innocent as these comments are, they literally drive me crazy. Not the annoyed kind of crazy, but the kind of crazy that seriously makes me question my instincts as Maksim's mother. I am comforted in knowing my instincts were, in fact, noticing something.

I am very excited to have the physical therapist as part of Maksim's team. He seems very proactive, and I really think he can help Maks make great strides with his gross motor skills. I look forward to learning more ways for us to help Maksim progress as well.

And here is the picture of the day. It was beautiful outside today, so I decided to take Maksim and Milyn on a walk. Maksim got to ride in the stroller for the first time today without being in the carrier! :) He thought he was such a big boy (and he looked like one, too), and Milyn loved being able to turn around to talk to him and make him giggle. We can't wait for more beautiful days like today! :)


- Posted by Shalee using BlogPress from my iPad

March 9, 2014

We have enjoyed a few days of nice weather the past couple of weeks. We took advantage of this by getting the swings out so Maksim could try them for the first time. He struggled with his balance and to keep himself up, but he absolutely loved it! We have also had the opportunity of visiting Logan's Grandma and Grandpa Petersen and my Grandma and Grandpa Smith. Of course we had to take pictures!























Maksim is officially outgrowing his size two diapers, and we bought our first box of size 3 this week! This is a big deal, and although they totally drown him around the waist, he needed the bigger size because he is growing in length!

Unfortunately, the whole eating thing is getting more and more stressful and discouraging. He had been eating puréed food pretty well for a while, but we are having a hard time getting him to eat or drink much of anything now. He has also thrown up the past three days during a couple of mealtimes, which is not typical for his usual self. We are hoping it is not a sign that he is coming down with something. I just wish I could find a way to get him to eat and drink more. He is so active, there is no way he is eating enough to gain a sufficient amount of weight. We can't even calorie-pack because we can't get him to eat in the first place. I guess we will just hope it is a phase and that he will magically start eating like a teenaged boy soon.

On a much much happier note, we enjoyed a completely hospital-free February! After spending part of November, December, and January in the hospital, this was a very welcomed change! Maksim also received his last dose of synagis this week to protect him against RSV. We are hopeful that this means spring is on its way and that we can leave cold and flu season behind us soon!

Lastly, check out this cute picture of Milyn and Maksim in the bath. This was Maksim's first time sitting up in the bath, and even though I had to hold him up the whole time, he looked around like he was such a big boy. He usually has to lie down in the sling because he can't safely sit up on his own, but we will keep trying every now and again in hopes of seeing improvements!





- Posted using BlogPress from my iPad

Maksim Update

Maksim has had a great couple of weeks full of progress. He has gone from not sitting on his own to pulling to stand and sitting independently for around 20-30 seconds. His balance and stability also seem to be improving as we continue to work harder and harder to get him stronger. I'm pretty sure he heard the OT say cerebral palsy and is determined to prove her wrong!

He is getting pretty good at pulling himself up very quickly, but he tends to get stuck in this standing position. This week,we are trying to focus on getting him to lower to his bottom or go to a half kneel. We have had to get the pack n play out for his naps during the day because he kept falling in his crib when his legs finally gave it, but he has started to improve in this area.

He had a 14 month preemie checkup on Monday to see how he is progressing. His pediatrician has some concerns regarding his motor skills, so he ordered home health physical therapy. He sent the referral over after the visit, and we are hoping we get a call soon, so we can get that started and see even more progress!

Unfortunately, all of the physical activity that Maksim does during the day is causing a major plateau in his weight. He only gained one ounce since his last visit. His current weight is 16# 7 oz, and he is 27 1/4 inches long. He is struggling quite a bit with his bottle, and we are only able to get about 12 ounces down him per day. He also has a hard timed drinking from a skippy cup, so he isn't getting enough fluid in. We are on as search for a way to get him to drink liquid, and we think we might have found one that works for him. We are hoping to see some progress with this as well. As far as eating goes, he likes to feed himself finger foods, but he is pretty picky. I have got to get more creative to find things he likes. Pinterest, here I come! :)

Thanks to everyone for all of the continued prayers for our Miracle Maks. We look forward to some answered questions at his neurology appointment on the 19th!


- Posted using BlogPress from my iPad

Two Scary Words with Scary Possibilities

I was put under general anesthesia when I had Maksim, and the first thing I remember when I woke up, was my obstetrician and the neonatologist telling Logan and me a bunch of numbers and statistics regarding survival rate and quality of life for babies born this early. Terminology was used like PDAs, brain bleeds, echocardiograms, head ultrasounds, retinopathy of prematurity, cerebral palsy, and necrotizing enterocolitis. Thankfully, my foggy brain was able to understand most of what was being said due to my nursing knowledge, but there were still a lot of scary unknowns and outcomes that required time to just wait and see how Maksim would be affected.

Maksim had so many tests run while in the NICU, three of which were head ultrasounds that we agonizingly waited for the results of. As Maksim's mom, I think these were the tests I stressed over the most. A PDA can be fixed with surgery, and NEC can ultimately resolve with intervention and cause no lasting effects. But brain bleeds. Brain bleeds are scary and bring along with them results such as cerebral palsy and other mental and physical deficits.

I remember the feeling I had when Maksim's last head ultrasound came back with clear results indicating no brain bleeds. There was a lot of relief knowing he had made it past that hurdle. Unfortunately, brain bleeds are not the only cause of cerebral palsy, and even without them, the micro preemie population remains at high risk for this disorder. Therefore, for a NICU mom, those scary words tend to annoyingly resonate in the brain when physical, mental, and social milestones are delayed.

I have watched Maksim progress and meet many milestones in the last year, but I have also seen delays that have continued to concern me. CP has come into my mind many times, particularly the past couple of months, and my fears were validated last week when Maksim's therapist mentioned it and suggested an evaluation by a neurologist.

As one might imagine, I have spent the last week tirelessly researching cerebral palsy. I have done way too much reading and video watching in an effort to come to my own conclusion on whether or not I think he has it. I have compared and contrasted and planned and prepared. I have researched medical equipment and therapy programs for children with cp. I have watched videos of kids with cp and videos of kids without it. One minute I am convinced he has it, and the next I am convinced he is just delayed and needs more time. In short, I have driven myself crazy in an effort to know, and plan for, the future.

We were able to schedule an appointment with a pediatric neurologist in Salt Lake, but it will not be until March 19th, which definitely seems like light years away. In the meantime, I pray I can live in the moment and enjoy my beautiful son without worrying about the future.


- Posted using BlogPress from my iPad