Maddox has a new baby cousin, Adriana! She is so cute and little! Maddox was such a big boy and visited the hospital with mommy.
Successes:
Successes:
~Maddox is riding his new RAZOR bike like a "professional" now! I'm so proud of him for taking this big step and really trying to peddle, steer and enjoy his freedom riding his cool bike! (Peddle, steer, go and stop are the trigger words we use when he rides to keep him focused. I didn't want to overwhelm him by having too long of explanations, so the trigger words keep him motivated).
***New update! He rode his bike with training wheels today all the way around block! He's doing great! He needs a little motivation pushing both peddles forward (because when you get tired, your feet slide back and you are "breaking" both peddles and stoping the bike).
~Maddox is continuing to do excellent at swim class. This past week he did not cover his ears once! (Due to his increased sound sensitivity, Maddox was covering his ears a lot during unexpected noises and "white noise" type of sounds like a fan on or water running from a fountain, etc.) He loves when his instructor Jon, "chases" him in the pool. Maddox loves to be chased and he giggles endlessly! He has been swimming underwater like a pro and is doing really well at longer distances in the pool. He can tread water for days it seems! His breathing control is so good and he really enjoys himself. The staff at SwimWest in Fitchburg are really amazing and friendly. They have accommodated Maddox to come in early prior to the other students and he gets the pool to himself. It really helps him with his sound sensitivity. He would swim well before but he was totally distracted by covering his ears the entire time. I think it was just too much input with the fans, other children, instructors, etc. Thank you SwimWest!
~Maddox once again is eating sausage links! Another added protein to his diet.
~He is really doing great using his "speaking" app on his iPad-Proloquo2go. It's an amazing app that has the same features as most $7,000 speaking devices. He is opening the application and chooses a category from the "Home" page (typically he goes to the "I WANT" category and chooses "Something To Eat" and then Makes a selection from the pictures of foods. As he chooses these categories and sub-categories the device speaks in a slow paced, lower toned, child's voice (to mimic his voice). I modified everything on the app in order to best suit Maddox and his sound sensitivities (that's why I made the voice lower/easier on his sensitive hearing). It's amazing all of the options that the application offers! We are using it during horseback riding and during our daily routine. He even uses it to tell me when he has to go potty when we are not at home. The goal is not to "replace" his speech with this device, it's just to help him have a voice. He can make choices, see our reactions and realize that asking for things and communicating serves him many functions. He has really started to mimic the sounds more and more everyday too. What a wonderful tool! Go buddy! ***Side note: We have purchased the iPad and applications ourselves. We were on a waiting list with the state to receive a speaking device and were denied. (Talk about ridiculous...Maddox is non-verbal and entering school.) We were re-applying but it could take 1-2 years at the rate we have seen additional parents waiting. We are very fortunate that Matt could provide this device for Maddox's needs. I'm very sad for all of the parents waiting on State aid. I know this must change! The State will need to fit this into the budget asap as the need is so great, with so many children having speech delays. However, the school districts are slowly but surely receiving these devices and adapting them into their therapeutic programs.
~The past few days we were able to get back on track with Maddox's bowel issues. He's gone #2 for 4 days straight now! We had gone almost 6 days without and that effects everything (concentration, irritability, illness, appetite, etc.). We were able to reduce again the amount of gluten free carbohydrates that Maddox consumed and increased the probiotics he takes along with added exercise that work his tummy muscles. As Maddox was ill from time to time over the past two weeks, I feel that the lack of productive exercises and altered diet didn't help his potty problems. The Brain Balance physical activities have really helped keep him regular and we continued to re-introduce them the past few days. Maddox is doing well with recognizing when he has to go potty and heading to the bathroom. This is great! My goal is to get him potty trained prior to school starting on Sept. 6th or soon after. Go Big Boy!
~Maddox has been doing well at helping with small chores around the house like putting dishes away with my continued aid and folding towels and his clothes. I do a lot of "hand over hand" prompting and encouragement.
~ I've started teaching him to tie his own shoes. This will be a slower process but he is starting to take interested.
~Maddox played "ball" back and forth with Matt at Grandma Paula/Brian's house. He likes standing at the top of their long driveway. He was engaged in tossing the ball back and forth for over 5 min. It was amazing! I know Maddox can do anything he puts effort towards! He just needs to have motivation and nothing can stop him!
***New update! He rode his bike with training wheels today all the way around block! He's doing great! He needs a little motivation pushing both peddles forward (because when you get tired, your feet slide back and you are "breaking" both peddles and stoping the bike).
~Maddox is continuing to do excellent at swim class. This past week he did not cover his ears once! (Due to his increased sound sensitivity, Maddox was covering his ears a lot during unexpected noises and "white noise" type of sounds like a fan on or water running from a fountain, etc.) He loves when his instructor Jon, "chases" him in the pool. Maddox loves to be chased and he giggles endlessly! He has been swimming underwater like a pro and is doing really well at longer distances in the pool. He can tread water for days it seems! His breathing control is so good and he really enjoys himself. The staff at SwimWest in Fitchburg are really amazing and friendly. They have accommodated Maddox to come in early prior to the other students and he gets the pool to himself. It really helps him with his sound sensitivity. He would swim well before but he was totally distracted by covering his ears the entire time. I think it was just too much input with the fans, other children, instructors, etc. Thank you SwimWest!
~Maddox once again is eating sausage links! Another added protein to his diet.
~He is really doing great using his "speaking" app on his iPad-Proloquo2go. It's an amazing app that has the same features as most $7,000 speaking devices. He is opening the application and chooses a category from the "Home" page (typically he goes to the "I WANT" category and chooses "Something To Eat" and then Makes a selection from the pictures of foods. As he chooses these categories and sub-categories the device speaks in a slow paced, lower toned, child's voice (to mimic his voice). I modified everything on the app in order to best suit Maddox and his sound sensitivities (that's why I made the voice lower/easier on his sensitive hearing). It's amazing all of the options that the application offers! We are using it during horseback riding and during our daily routine. He even uses it to tell me when he has to go potty when we are not at home. The goal is not to "replace" his speech with this device, it's just to help him have a voice. He can make choices, see our reactions and realize that asking for things and communicating serves him many functions. He has really started to mimic the sounds more and more everyday too. What a wonderful tool! Go buddy! ***Side note: We have purchased the iPad and applications ourselves. We were on a waiting list with the state to receive a speaking device and were denied. (Talk about ridiculous...Maddox is non-verbal and entering school.) We were re-applying but it could take 1-2 years at the rate we have seen additional parents waiting. We are very fortunate that Matt could provide this device for Maddox's needs. I'm very sad for all of the parents waiting on State aid. I know this must change! The State will need to fit this into the budget asap as the need is so great, with so many children having speech delays. However, the school districts are slowly but surely receiving these devices and adapting them into their therapeutic programs.
~The past few days we were able to get back on track with Maddox's bowel issues. He's gone #2 for 4 days straight now! We had gone almost 6 days without and that effects everything (concentration, irritability, illness, appetite, etc.). We were able to reduce again the amount of gluten free carbohydrates that Maddox consumed and increased the probiotics he takes along with added exercise that work his tummy muscles. As Maddox was ill from time to time over the past two weeks, I feel that the lack of productive exercises and altered diet didn't help his potty problems. The Brain Balance physical activities have really helped keep him regular and we continued to re-introduce them the past few days. Maddox is doing well with recognizing when he has to go potty and heading to the bathroom. This is great! My goal is to get him potty trained prior to school starting on Sept. 6th or soon after. Go Big Boy!
~Maddox has been doing well at helping with small chores around the house like putting dishes away with my continued aid and folding towels and his clothes. I do a lot of "hand over hand" prompting and encouragement.
~ I've started teaching him to tie his own shoes. This will be a slower process but he is starting to take interested.
~Maddox played "ball" back and forth with Matt at Grandma Paula/Brian's house. He likes standing at the top of their long driveway. He was engaged in tossing the ball back and forth for over 5 min. It was amazing! I know Maddox can do anything he puts effort towards! He just needs to have motivation and nothing can stop him!
Regressions:
~Maddox had accidentally taken his brothers regular chicken strip (2 weeks ago) while driving and scarfed it down before I could fix the issue. I was hoping zero side effects would be seen from this. However, Maddox has had a rash develop and worsen over the past two weeks. At first I thought is was from our newer toilet seats and Maddox taking so long to go potty and his legs rubbing the seat. But, after researching it last week and contacting my mommy friend on Facebook I discovered it was eczema due to multiple causes. Maddox is very allergic to egg, cow's milk and gluten (wheat protein)...all ingredients in the chicken Gavin was eating.(FYI this is why I try to keep Gavin and Maddox on same diet as much as I can because this will not occur then). And Maddox was slightly exposed to the lawn maintenance team that sprayed our yards last week. I never let him outside that day but he did sneak onto the screen porch a couple of times. I have a feeling the three factors described are causing this flare-up on the back of his legs. I have used Aquaphor ointment and looser clothing and of course avoided any additional food allergens. Here's additional information on eczema:
~Maddox had accidentally taken his brothers regular chicken strip (2 weeks ago) while driving and scarfed it down before I could fix the issue. I was hoping zero side effects would be seen from this. However, Maddox has had a rash develop and worsen over the past two weeks. At first I thought is was from our newer toilet seats and Maddox taking so long to go potty and his legs rubbing the seat. But, after researching it last week and contacting my mommy friend on Facebook I discovered it was eczema due to multiple causes. Maddox is very allergic to egg, cow's milk and gluten (wheat protein)...all ingredients in the chicken Gavin was eating.(FYI this is why I try to keep Gavin and Maddox on same diet as much as I can because this will not occur then). And Maddox was slightly exposed to the lawn maintenance team that sprayed our yards last week. I never let him outside that day but he did sneak onto the screen porch a couple of times. I have a feeling the three factors described are causing this flare-up on the back of his legs. I have used Aquaphor ointment and looser clothing and of course avoided any additional food allergens. Here's additional information on eczema:
~Eczema outbreaks, or "flare-ups" are caused by an overreaction of your skin's immune system to environmental and emotional "triggers". These can range from irritants such as chemicals; to allergens, such as dust or mold; to stress.
For those with eczema, it is very helpful to identify and avoid exposure to such triggers. However, because there are so many potential triggers, this can be challenging.
The following sections explain different triggers that may lead to eczema outbreaks:
TEMPERATURE/HUMIDITY::Extremes in temperature and humidity can worsen or trigger an eczema flare. While it may be tricky, maintaining a moderate and stable temperature and humidity all year is helpful.
When it's warm and humid in summer, make sure the temperature inside remains cool with an air conditioner. Also keep in mind that air-conditioned air may also be drying to your skin, so be sure to use a moisturizer.
In the winter, the air tends to be drier (cold air holds less moisture, and heating systems generally introduce very dry, hot air into homes), which makes it easier to develop dry skin. Since dry skin is more prone to itching, using a humidifier during the winter months can keep the humidity at an optimal level.
IRRITANTS:Irritants can be both physical and chemical. Avoid products containing potentially irritating chemicals. Usually, these are easy to identify—things like pesticides, paint strippers, etc.,—but others may not be as obvious. Ingredients such as alcohol, astringents, and fragrances may trigger or worsen eczema. These ingredients can be found in cosmetics, emollients, cleaners, air fresheners, toilet paper, etc. Reading ingredient lists on products is a smart way to avoid contact with irritants.
CLOTHING:Something as simple as the clothes you wear can have a great impact on eczema management—from the types of fabrics to how you care for them.
It's best to avoid materials that feel "itchy," things like wool, burlap, etc. Try to wear soft fabrics like cotton, which tend to be less irritating. It's also a good idea to wash all new clothes, linens, and towels before using them for the first time.
Many detergents and fabric softeners may contain chemicals such as fragrances that can irritate our skin. Always read the list of ingredients to avoid contact with irritants. Generally, it is good to choose a mild liquid detergent and put your cloths through an extra rinse cycle when they are brand new.
ALLERGENS:If you experience allergic reactions such as asthma, breathing difficulty, hives, etc., you may already avoid some allergens. It is also important to identify the allergens that specifically trigger your eczema flare-ups.
Although people with eczema are more likely to develop allergies to food (milk, eggs, wheat and peanuts) and airborne allergens (dust mites, molds and pet hairs), it is important to note that allergies can occur independently from eczema. Pay attention to any allergy that may worsen or trigger your eczema, and let your doctor know.
It may be a good idea to enlist the help of a specialist to determine what you are allergic to and what you should avoid.
STRESS:Sometimes, it's hard to stay relaxed, especially when your eczema flares-up. Yet research is now showing that keeping a calm head and good mental outlook may be one of the best ways to help keep eczema in check.
Emotional stress is a well-known trigger of eczema flare-ups. Patients can have difficulties with anxiety, anger and hostility caused by having eczema. This only adds to the problem. Learning to reduce stress may lessen the frequency.
 | Meditation, relaxation techniques and stress management can help. |
| You may also find that you feel more in control if you keep a diary or other record of flare-ups. |
| Support groups are another way to help you feel better. The National Eczema Association for Science and Education (NEASE) can provide information on groups near you. |
Therapies:
~Maddox had 20 + hours of WEAP therapy this past week
***WE ARE VERY discouraged by the recent actions of Maddox's in-home intensive therapy provider (WEAP). After his yearly testing, WEAP has sent us a letter stating that due to the lack of progress shown by Maddox during this past year of therapy and issues with scheduling due to our additional therapy commitments, that it would be "unethical" for them to treat Maddox anymore and we will need to find Maddox an additional service provider by the first week in September. As most of you can imagine we were very taken back by this abrupt end to our child's services. We had already had concerns due to the turn-over rate with Maddox's line therapists, but were trying to push forward and enroll Maddox in additional therapies to fill the voided downtimes. We have since had a meeting where I respectfully expressed disappointment in how this was handled and also that this determination was "in their eyes" based on lack of progress on Maddox's part and scheduling concerns with our family. We have dedicated this past year to WEAP and it's program. We have seen a total of 6 therapists quit our son's team (due to personal issues, schooling issues, moving issues, vehicle issues, etc.) As my blog clearly demonstrates...Maddox has all of the potential in the world and this is sad that our children can slip through the cracks if someone isn't there to advocate for them. This happens with many children in all kinds of circumstances but, my child doesn't have a voice to stand up for himself yet and I will. It's very sad that the State doesn't provide better pay for their line-therapist as they take on a hard role and do a nice job with the training they are provided. However, the travel the job requires and the massive amount of scheduling I'm sure makes it tough to stick with the job unless your heart is really in it. I want to thank them for the structure they were attempting to establish for Maddox and the skills they were hoping to teach him. I will continue to educate myself more and more and plan to provide Maddox's in-home therapeutic needs. We have additional providers to consider, however, the same staffing issues can occur with all of these programs. I'm always here for my Maddox and that stability is key.
~"Brain Balance" road-trip to Cedarburg-due to his Doctor falling ill and then Maddox being run down, we were unable to attend his sessions the past 2 weeks. However, we have still been working on the exercises at home.
~Hippotherapy (horseback riding 30 min)ends until mid-Sept. fall sessions
~Swim session (30 min)
~Speech therapy thru WEAP (1 hour) two weeks ago and we were able to pay for an additional session for me to focus on iPad training. We are using Proloquo2go on Maddox's iPad as a speaking device. It's an amazing application, and is used in many school districts. It is very comparable to the more traditional DynaVox speaking devices, expect the iPad plus the Proloquo2go application together are still much less expensive then the DynaVox devices.
~Play therapy session and "dyad" with 3 other friends his age at Common Threads in McFarland-Maddox was unable to attend this past week as he was run down and had a fever.
Food Journal: (All foods are organic & free of gluten, egg, casein, soybean, strawberry)
~Maddox successfully tried sausage links pan fried in olive oil. This use to be a favorite many months ago. Good protein for my buddy. Maddox also has been doing well with Allergy Free brand Chicken fingers. I was so happy he tried them again this last week, along with sweet potato straight fries and organic potato chips. It sounds funny but I can only remember Maddox eating potato chips one or two other times in his life.
Supplements: (Mixed with 1/4 cup Aroniaberry juice diluted & pressed-organic apple juice)
~AM~
DHA 2.5 mL(1/2 teaspoon)
Pure Vitamin D(4 tiny drops...each little drop=1,000 IU
Digestive Enzymes w/Isogest(1 capsule)
1/4 teaspoon Probiotics (not the past 4 days...waiting on shipment)
Kirkman's hypoallergenic Children's Multi-Vitamin/Mineral Capsules(x1)
~Lunch~
Digestive Enzymes w/Isogest(1 capsule)
Kirkman's hypoallergenic Children's Multi-Vitamin/Mineral Capsules(x1)
~Dinner~
Digestive Enzymes w/Isogest(1 capsule)
~PM~
1/4 teaspoon of Probiotics(not the past 4 days...waiting on shipment)
Melatonin 3mg (1/2 capsules)
Zinc (1 capsule)
(I'm having troubles getting videos to post to youtube from my laptop but, I hope to post more soon. Or check out my Facebook page for tons of pictures added weekly).
